Why don't we like Augmentative and Alternative Communication (AAC) Devices here in Wandsworth?

  • By mummytosix
  • 26 Feb, 2017

This is a tragedy that denies disabled children a way of expressing themselves!

I have a little boy now 7 years old who is diagnosed with Cerebral Palsy, Autism (non verbal), Severe Sight Impairment who is also incontinent.

He's completely non verbal and my husband and I had been campaigning since 2013 for him to use an Ipad and associated specialist software to communicate.

You wouldn't believe what a challenge it's been to get it for him!  He is now fully communicating with his IPad to tell us and his teachers what he wants, doesn't want or needs.  He's still autistic so his conversation is limited and is still not particularly social!  However we had to fight every step of the way to get him to be allowed to use this technology and faced stiff opposition from his previous school.  Prior to using his Ipad my son was taught how to use PECS cards and to sign Makaton.  Whilst I fully support these low tech methods and certainly agree that they have their place it seemed criminal 2013 years AD to not harness his amazing computer skills to allow him to talk to us.

We were met with fierce opposition from the NHS and this was about cost.  Now I get that, they have to think carefully about setting a precedent and dishing out Ipads to kids.  The cost implications could be massive.  However we were willing all along to buy my son his own Ipad.  In actual fact we bought him two of them.  One to use and one as a spare.  So that was that - we crossed that bridge.

Only to be met then with tough opposition about our son using an Ipad in school.  The reasons given were that it would distracting to other children and would take up a lot of time for staff to administer.  Four years on, despite all the concerns we were lucky enough to have a good teacher get right on board with it and make this happen for our son.  The rewards have been amazing.  He can now tell us and the school exactly what he want's and voice his needs and make choices.  He's also quite comical with it and has developed a funny little computerised spoken personality.  The other week his teaching assistant wanted him to do something he didn't want to do and he typed "Go away Jane".  We'll call her Jane to keep this confidential - that isn't her name.  Jane and the rest of the teaching staff were totally amused and so glad that my son could voice his feelings.  Previously, he would have simply lashed out.  My son's current school are totally on board with this system and have made it work despite some initial reservations.  Ofsted are calling for more use of computerised speaking devices in schools - goodness me it's the logical way forward.

Please if as parents you come accross this opposition - please do persist, the difference it's made to our son's quality of life has been truly amazing.
By mummytosix 19 May, 2017
So some social workers get this completely.  Others who have done extensive work in child protection don't.  

I have experienced some who come into my home in full child protection mode (blue lights flashing) due to their backgrounds.  Disabled Children's social work is an entirely different beast to Child Protection work.  For some I've found that there is a period of adjustment were offensive statements are made and you are made to feel quite uncomfortable even though your only crime is giving birth to a disabled child.  It's quite offensive and I've never gotten used to it.  I challenge them where I find it and this can make them worse.  

It's a slippery slope because you need the respite and services but sometimes you have to be treated in a not very nice way to access those services.  It's not always the case but do not be surprised if you come accross it.

Obviously social workers have to be on the look out for anything fishy.  We all get that - so does everyone working with children.  However involvement with families with Disabled Children is not usually because they've done anything wrong - other than have a disabled child.
By mummytosix 28 Feb, 2017
Today marks 9 years that my husband and I have been together.  We will be married 7 years this October.  I met my husband when I was 32, he was 26.  I had four children from my first marriage - they all have SEN/Disabilities.  My husband had no children when I met him.  It was a tall order!  No one thought it would last and quite understandably so.  We went on to have two children of our own and the first is the most significantly disabled of all of my children.  He is 7 and our youngest is 3.

The odds for marriages and relationships surviving children with disability are grim.  For all the joy you share there is also an awful lot of stress, pressure and anxiety.  For me most of it is not brought about by the children themselves it's brought about by the constant battle to access services, social care, diagnosis and the right education provision.  It's hard enough already just caring for disabled SEN children but the other battles that you have to endure can make it feel quite unmanageable.  Luckily when I fall, my husband picks me up and vice versa.  We have rarely both fallen at the same time which is lucky really!

Until this year when we finally got some meaningful short breaks/respite after nearly 16 years for me and 9 years for him, we'd not even really been on a date.  We couldn't do any of the things that normal families or couples do.  It takes it's toll on you I won't lie.

After my first three children were born inside a space of 24 months (all with SEN/disabilities - though I didn't know it at the time) I developed an unhealthy relationship with alcohol.  After putting my children to bed at night I would open a bottle of wine and this became my way of unwinding and it all seemed perfectly reasonable at the time.  This was not a good habit to get into and I stopped drinking entirely nearly 7 years ago - so did my husband because he doesn't like it much either!  I mention it openly because it's one to watch for and easy to slip into a bad habit. These days we get 4 hours per week respite breaks and we treasure that time together.  We never waste it and we always do something special.  This could be something free like going for a walk in Richmond Park or enjoying a meal together.  It doesn't take away the pressures during the rest of week but it does make life feel more pleasurable which raises your overall moral at all the other times.  The breaks didn't come easy though and they too ironically were a fight to get put in place.

There is a fantastic piece here in the Huffington Post about the impact of having SEN/Disabled Children on relationships:


Contact a Family also have put together a helpful booklet:


Anyway Happy Anniversary to my wonderful husband - Go Us!

By mummytosix 26 Feb, 2017
Research shows that parents with disabled children have higher levels of stress and lower levels of wellbeing than parents with non-disabled children. A report published during Carers Week 2011 found that 75 per cent of carers, including parents with disabled children, had suffered ill health as a result of their caring work. Of these, 76 per cent had mental health problems, mainly depression, anxiety and stress.

Please see below links to much research on this subject:

This research tends to refer to parents with typically one SEN/Disabled Child - I have 5.  I will not lie for one moment and say that what I do and have been doing for nearly 16 years is not stressful - it is.





By mummytosix 26 Feb, 2017
I am nearly 42 and was about in the 1990's during the raving scene . . . Disabled Children's Social Work sometimes puts me in mind of:

"Your names not down, you're not coming in" !!!  For those that are too young to remember 1990 or didn't partake in the raving culture of that era, this actually translates to:

"Your child's disability is not one covered by our eligibility criteria, so we won't help you - goodbye now"

Here is a nice little piece from the Disabled Children's Council on Eligibility Criteria:

It's key to note that regardless of what they say to you, if your child has a disability covered by The Equality Act of 2010 you are entitled to a social work assessment - that doesn't mean that you are going to get any services but you are entitled to an assessment.  You are also entitled to an assessment as a Carer to a disabled child.

As strange as it sounds, I had to fight very hard for my local authority to acknowledge that my disabled children were "children in need" as per the Children's Act of 1989.  All disabled children are immediately considered "A Child in Need" as per that act.  This doesn't mean that you are abusing your children or that they are at risk but it does mean that you might qualify for some respite services or "short breaks".

Do not be fobbed off.  I was pushed from pillar to post for years in Wandsworth from department to department, each one citing that I didn't meet the criteria for a service.  After 13 years they finally acknowledge that we do deserve a service and we get short breaks and a pretty good care package, but it wasn't easy - I kid you not.  The road was filled with lots of pain, tears, frustration, lots of delay and lot's of very unhelpful behaviour and attitudes.

Objectively, I should say that I still believe despite my bad experiences that social workers don't become social workers because they want to prevent people from getting help or because they want to be nasty.  I believe they become social workers because they want to help people in the beginning.  However, they quickly learn that they cannot help people as they would like to because of limitations on resources and policies which come from much higher up the chain.  They usually don't fully understand disability and realistically how could they?  It takes doctors years at university to become fully competent on one disability yet social workers are meant to have an understanding of them all - They don't.  You have to educate them on the needs of your child and your family and you might have to do it over and over again because they change frequently.

I have definitely been blessed with a few exceptional social workers who were incredible to me and my children and 'got' that having disabled children didn't automatically mean they were 'at risk'.  Disabled Children's Social work is an enitirely different beast to Child Protection work - though often you wouldn't know it and you will be treated just the same - even though your only crime is giving birth to a disabled child (or 5).  This I think is because some social workers come from a heavy CP background and frankly are just in 'that mode'.  It's unpleasant to experience but it's part of the package.  If you ask for help in this world you do unfortunately open yourself up to opinions and judgements - it's the way it is.

In the end you have to ask yourself is the help given worth the difficulties encountered? - if it is you have no choice but to crack on with it.

Copied from the Disabled Children's Council - see link above for full document

The use of eligibility criteria

3.36 Sadly these distinct processes (the service provision decision and the consequences of the decision) are sometimes confused. The confusion relates to the notion of ‘eligibility criteria’ – which in itself is not surprising, since as Lord Laming observed in his Victoria Climbié Inquiry Report49 their use ‘to restrict access to services is not found either in legislation or in guidance, and its ill-founded application is not something I support’. Eligibility criteria are, of course, criteria which are used to determine eligibility, and the confusion relates to the question: ‘eligibility for what?’

3.37 As we have seen above, children’s services authorities are under a statutory duty to assess all children in need. Accordingly, it would be unlawful for a local authority to impose its own ‘eligibility criteria’ for assessments. This would constitute an extrastatutory hurdle for a child to cross. However, once a child has been assessed, the law does not require that services be provided in every case.

3.38 Various statutory provisions require social services/children’s services departments to provide support for disabled children. The most important of these comprise CA 1989 and CSDPA 1970 s2. However, other provisions do exist and one of these, Mental Health Act 1983 s117, is considered briefly at para 5.82.

3.39 The general duty50 to provide support services under CA 1989 Part III (see para 3.58) is triggered by the authority ‘determining’ (s17(4A) that the provision of services is ‘appropriate’ (s17(1)). The specifically enforceable duty51 under CSDPA 1970 s2 (see para 3.48), is triggered by the authority being ‘satisfied’ the services are ‘necessary’.52 Arguably there is very little, if any, difference between these two tests. In practice, a local authority could (and perhaps ‘should’)53 decide that it will only ‘determine’ that the provision of services is ‘appropriate’ under CA 1989 Part III when it is satisfied these are necessary (ie the test for accessing support under the 1970 Act). If this is right then the same decision must effectively be made regardless of which Act the decision is being taken under.

3.40 It follows that it is reasonable for an authority to state that a disabled child will not as a general rule be ‘eligible’ for support services unless the authority is satisfied that these are necessary. This then requires that the authority explains the process by which it will decide whether or not a child is ‘eligible’ – ie the criteria it uses to make this judgment. The use of ‘eligibility criteria’ in this context has been held to be lawful by the courts.54

3.41 Such criteria must, however, promote the objects of the legislation, ie that so far as possible disabled children be brought up by their families55 and that the services provided should seek to minimise the effects of their disabilities and give them the opportunity to lead lives which are ‘as normal as possible’.56 Given that resources are limited, the criteria should also contain an element of ‘prioritisation’ – ie it is legitimate for authorities to target those in most need and to devote resources where they can have the most positive impact.57 While the use of such criteria is well developed in relation to adult care law58 this is not so for children’s services. In R (JL) v Islington LBC,59 Black J stressed the ‘pressing need’ for government guidance on eligibility criteria for children services, given that many local authorities have, at best, imperfect, and, at worst, unlawful criteria. As Clements and Thompson observe (para 24.36), all too often these: are poorly publicised and formulated with little or no consultation. It appears that in many cases, access to support services is measured largely by assessing the imminence of family breakdown. Thus if it is imminent or has occurred, resources can be accessed, but not otherwise. Clearly such criteria cater for the needs of children suffering abuse or neglect but are likely to be inappropriate for many families with disabled children or young carers. In practice such policies deny support to families until such time as they fall into (or are at severe risk of falling into) the child protection regime: effectively therefore they cater, not for CA 1989 Part III (provision of services for children and their families) but for Part VI (child protection).

3.42 It is permissible therefore, for children’s services authorities to operate eligibility criteria to limit access to services. However, the principles of public law and departmental guidance60 demand that there must be a rational process for deciding which children are eligible for services and which are not.

Eligibility criteria must therefore:

• be transparent (because both of the policy expectation – see, for example, the Aiming High for Disabled Children ‘core offer’61 – and to comply with public law duties and an authorities’ obligations under ECHR article 8);62
• explain in clear ‘everyday language’how services are allocated on the basis of need;
• take account of the impact of disability on children and families; and
• have been the subject of consultation which has taken into account (among other things) the relevant equality duties, particularly the duty under the Equality Act 2010 s14963 (see paras 9.73–9.85).

3.43 The human rights obligations on public bodies (particularly article 8: see para 3.46) additionally require that any criteria they operate must not be so strict as to deny support where there is a real risk of significant harm64 to the child or family if support is not provided (being harm that is more than minor or trivial).65

3.44 The lawfulness of one example of eligibility criteria for disabled children’s services was tested in R (JL) v Islington LBC (2009)66 where the court held the criteria to be unlawful for a variety of reasons, including that i) they sought to limit access to ser-vices regardless of the outcome of the assessment (through imposing an upper maximum limit on the support that could be provided – in this case respite care) and ii) in formulating the criteria the council had failed to have proper regard to its general disability equality duty under (what is now) the Equality Act 2010 s14967 (see paras 9.73–9.85).
By mummytosix 26 Feb, 2017
I have a little boy now 7 years old who is diagnosed with Cerebral Palsy, Autism (non verbal), Severe Sight Impairment who is also incontinent.

He's completely non verbal and my husband and I had been campaigning since 2013 for him to use an Ipad and associated specialist software to communicate.

You wouldn't believe what a challenge it's been to get it for him!  He is now fully communicating with his IPad to tell us and his teachers what he wants, doesn't want or needs.  He's still autistic so his conversation is limited and is still not particularly social!  However we had to fight every step of the way to get him to be allowed to use this technology and faced stiff opposition from his previous school.  Prior to using his Ipad my son was taught how to use PECS cards and to sign Makaton.  Whilst I fully support these low tech methods and certainly agree that they have their place it seemed criminal 2013 years AD to not harness his amazing computer skills to allow him to talk to us.

We were met with fierce opposition from the NHS and this was about cost.  Now I get that, they have to think carefully about setting a precedent and dishing out Ipads to kids.  The cost implications could be massive.  However we were willing all along to buy my son his own Ipad.  In actual fact we bought him two of them.  One to use and one as a spare.  So that was that - we crossed that bridge.

Only to be met then with tough opposition about our son using an Ipad in school.  The reasons given were that it would distracting to other children and would take up a lot of time for staff to administer.  Four years on, despite all the concerns we were lucky enough to have a good teacher get right on board with it and make this happen for our son.  The rewards have been amazing.  He can now tell us and the school exactly what he want's and voice his needs and make choices.  He's also quite comical with it and has developed a funny little computerised spoken personality.  The other week his teaching assistant wanted him to do something he didn't want to do and he typed "Go away Jane".  We'll call her Jane to keep this confidential - that isn't her name.  Jane and the rest of the teaching staff were totally amused and so glad that my son could voice his feelings.  Previously, he would have simply lashed out.  My son's current school are totally on board with this system and have made it work despite some initial reservations.  Ofsted are calling for more use of computerised speaking devices in schools - goodness me it's the logical way forward.

Please if as parents you come accross this opposition - please do persist, the difference it's made to our son's quality of life has been truly amazing.
By mummytosix 26 Feb, 2017
I have been dealing with SNAS at Wandsworth since 2004, long enough to remember the good old days when you phoned up your case manager and they spoke to you.  If they couldn't someone took a message and they rang you back.  Like they really did actually return your call - you could rely on it.  There was order, there was peace, there was a process and I felt like the council were on top of things.  To be fair my children's cases were 'no brainer' statements of SEN where they had box ticking qualifying disabilities supported by professionals that were not in any way contentious.  I'm sure not everyone had such an easy time of it - but I did.  It was good back then for a while.

Those days are now sadly all over Casanova.  I now repeatedly find myself looking very much like the woman in the picture above!  There is a constant and revolving door of agency staff employed.  Case manager's don't have permanent contracts and don't stay in post for very long.  Since EHCP's came into play the whole department has gone into meltdown and it's chaos personified.   Still in post are a few good women but they can't operate as they used to.  Nothing is delivered on time and they accept it as 'the way things are' and 'nothing they can do' - taking that lead from other London Boroughs who are also in a mess.  When I say nothing is delivered on time, I mean legal statutory deadlines - deadlines laid down in law which must be observed by LAW .   Who suffers? certainly the case managers must suffer since they don't stick around very long (I wouldn't either - who would choose to be involved in it? I've got no choice so here I am) parents definitely suffer (see the photo above . . . this has become my resting face of late - lol) but worse is that disabled children suffer and go without the help that they need and should be given by law.

Now when you phone up and someone takes a message and someone says that someone will get back to you - you need to take that with a HUGE pinch of salt because they probably won't.  To be fair there are a couple of girls in that office who have gone out of their way to return my calls even if they couldn't give me any information - just out of pure human decency and acknowledgement I think to my pain!  I owe it to them to mention this.

I just do wonder though what the problem is?  Senior management knew these EHCP's were coming, they had loads of warning about them to plan and prepare.  Can EHCP's be an excuse when fair warning was given?  Is it bad planning and gross underestimation of the impact or is it under funding?  Are they attempting to deliver these massive changes in SEN Law on a shoestring?  Thereby creating chaos and confusion?  I'd love to know which is it?  Or if it's both.  I suspect it's probably both - bad planning, under funding - it's certainly not lack of funding that's for sure.  Wandsworth have 311 million in the bank - give SNAS a bit of that I say - help these people out they are drowning!  People have been paid some pretty hefty taxpayer funded salaries to be in charge of this disaster . . . How has it gone so wrong?  Will it ever improve?  We are three years in now!  It doesn't seem to be improving to me - the end user on the ground, literally on the ground :O  It feels like it's getting more and more chaotic to me.

I send an email like a normal person and wait a reasonable amount of time for a response.  Sometimes I might be responded to up to three weeks later, sometimes I am just eternally ignored.  The chasing for a response is so time consuming, I wish I could bill them for the time I waste.

I have two children whose education, health and care assessments are well past statutory deadlines.  One is at home being home educated by me alongside my caring for 5 other children.  He can't get an assessment of needs due to the delays.  The other is in a primary school not really getting her needs met pending a decision by the LA to issue a draft EHCP.  I should have been told in early December if a draft plan was to be refused to allow me the opportunity to proceed to tribunal without delay.  It will be March in two days and I still don't know what's going on - can't really get any straight answers.  It's chaos out here with it - absolute pure and unbridled chaos!
By mummytosix 26 Feb, 2017
Ok, so prior to your disabled child being in a special school, your child might have various therapies delivered at your local hospital, clinic or perhaps even by way of the the therapist visiting you at home.  You take your child to these appointments, you tell the therapist about the problems that your child faces and they examine or test your child and then they come up with a plan for intervention to help the child which you are in included in.  They usually write a report which you eagerly read when you receive it.  You keep in fairly regular contact by way of routine appointments.  The therapist may go into your child's school (if they are in mainstream) or indeed come out and see you at home and all is well . . .  everything is as it should be.  In my humble opinion, I hasten to add.

Then your child starts at a specialist disabled school and man oh man it's a game changer!  Throw out the rule book and everything you understood to be right and true because the whole game is about to get changed up on you!

Your nice appointments at the hospital with the lovely therapists are gone.  Your feeling of being in the loop and in the know about your child's care is also gone.  Now you are the last to know anything and the therapy provision relationship is between your child, your child's teacher and the therapist.  Your child's class teacher may not know your child very well, perhaps it's early on in the school year and they haven't got to know your child completely yet.  That doesn't matter - they are the primary supplier of information to the therapist about your child and you do now unfortunately become the last to know.  This isn't anything personal it's just the nature of the beast.  You might get a report on your child once per year at the annual review which will tell you what is being worked on and what the goals are - though some provisions don't even do that.  This is done anyway as part of the annual review of the statement or EHCP and by law you need to get a copy - so you usually will!

The focus on the therapy is all school based and the focus is on therapy interventions in the education setting.  It's delivered in conjunction with the education package.   What you are struggling with at home becomes irrelevant and you are now kept right out of it.  The fact that you gave birth to the child and have legal responsibility and PR seems all very irrelevant now . . . 

I was so shocked when I first experienced it, I was like what is going on here? It's madness!

It isn't madness - it's just the way it is.  Some are much better than others.  I think the therapists who are parents themselves tend to be better at keeping you in the loop.  This is because they can probably empathise with the fact that you might just like to know what is going on with your own child.

These are not bad people - don't get me wrong here, I am not here bad mouthing them.  But this is the way it works and this is the way it is - it's like a long standing institution and you cannot change it.  Wanting to know and wanting to be included feels like a kind of strange request/concept.  This is my experience unfortunately.

A few years ago, I complained until I was blue in the face and I managed to change it slightly for a little while.  It was personally draining but I did effect some change for a very short while and it was better.  When you do raise it, these are intelligent people and on one level they get it.  I think that in reality they are probably just too busy to actually deliver a holistic service that takes into account the whole child both at home and at school.  There is just not the time or funding I suppose to deliver it.  I've given up now though and I accept the things I cannot change for my own sanity!

Also your child will likely have locum after locum who probably will not have the time to build a relationship with you and your child.  When I first experienced this I thought it was just that particular school but after a few more years and a few more schools I realise it's standard practice pretty much at all of them.  It's just the way it's set up.

So I've stopped moaning now - it's absolutely pointless.  I am just grateful for any snippets of info I get and I have to let go and hope that all is as it should be!  I don't really know though!  I mean I really don't have a clue what is going on with any of my children's therapies in their schools. I am totally estranged from the whole thing.  Am I control freak, I sometimes wonder?  Am I expecting more than I deserve? My gut tells me that I'm not but my gut feelings are irrelevant here!

Well either way, I have raised the white flag on it.  There are lots of battles when you have a disabled child or a child with SEN and this is one I'm not going to win so I have to concentrate my resources towards the things that I can change these days.

I don't know, who knows? a special school therapist or perhaps someone from the Clinical Commissioning Group may happen upon my page and read this.  To them I say this: please . . . we do want to know, we do want to be included, maybe not all parents but some do - please keep it in mind.  We are grateful for the work that you do, we do realise the pressures on your time and how strained the NHS is but if you do get a spare moment please please keep parents in the loop!

The End - All power to all therapists working within a sinking NHS ship - it's getting choppy out there since 2010!

By mummytosix 26 Feb, 2017
The diagnosis of Autistic traits at age 5 has caused my 15 year old son so many problems and led to him to not receiving the right care/provision for an entire childhood.  In the end this was leading him to psychologically deteriorate until he was finally diagnosed with Autism aged 13 where it was conceded by the Consultant that not only was he he autistic he was moderately to severely autistic.  I am only a simpleton, I left school at 13 without a GCSE to my name and I had a sporadic primary education.  I am not medically trained but I can personally testify that this label has been so unhelpful to my child and caused us a lot of pain for a very long time.

My son was born when I was 26 weeks pregnant.  That is 14 weeks premature which is considered extreme prematurity.  He weighed just over a 1lb at birth.  He was developmentally delayed right from the word go, late to smile, late to sit, late to crawl, late to walk.  He had problems with feeding as well and needed feeding a tiny amount every hour, 24 hours per day, which frankly nearly killed me.  He was also not an emotional needy baby and was happy to sit just flicking, tapping, rocking or banging things.  He didn't play with toys he just threw them around.  He was my first baby, I was 26 years old and I didn't have a mum around so wasn't sure what was normal and what wasn't.  I was just glad to get him home from a neonatal intensive care unit where he'd been for 3 months since his birth.

I didn't know then that I was raising an Autistic baby/child and I did it until he was 13 years old without a shred of help or information from anyone.

At two he went to a nursery placement and the staff there soon realised that things were not right with him.  I was oblivious.  In hindsight I can tell you that there is some sanctuary in oblivion!  He was my son and I loved him and was just glad that he was alive after his premature birth.  I'd already miscarried one baby at 13 weeks prior to his birth so I was just glad that he was alive and I got to take him home.  It's funny how your perspective changes when you have a baby that might not survive.  When they do survive all the normal worries don't worry you so much if that makes any sense?

So the nursery placement realised that something was wrong.   They started all kinds of tests from professionals.  They told me that he wouldn't be able to start a nursery at a mainstream school when he was 3 because of his difficulties.  We still were not quite sure what those were but they fitted under the umbrella of "developmental delay".  This made sense to me as I knew he was a premie baby.

He started mainstream school at age 5 and he started with a statement of special educational needs.  I didn't need to fight for this - the professionals were all in agreement that he needed one.  So it was easy, I just sat back and they did all the work and I didn't really understand it all.  They wanted me to put him in a specialist disabled school and i went to look at one.  I was really upset by what I saw there and I almost ran out crying.  I couldn't get my head around the fact that my son was physically able but they thought he should be there and I felt that putting him in a disabled school would make him disabled.  I didn't want him to be disabled.  I wanted him to be fine!  I thought on some subconscious level that if I put him in regular school - being regular would somehow rub off!  Bare with me before you shoot me down because in the last 16 years I have done a complete u turn in my thinking.  I was 26, this was my first baby and I had no previous first hand experience of disability and I didn't want my baby to be disabled.  I wanted him to be ok.  I was wrong.

So I kind of forced him onto this mainstream primary school (a well sought after one I hasten to add) who bless them couldn't say no to taking him because I guess it would have been discriminatory.  They took him and tried their best but it was a nightmare for them!!  He couldn't cope with mainstream school, couldn't cope with the overstimulation and the social interaction and he ran around like a headless chicken most of the time as a result of it.

I moved to another part of the Borough and put him into another highly sought after school.  I'd worked for an estate agency in Wandsworth (a big independant one) and I'd seen all these professionals (solicitors, doctors etc) buying houses to put their kids into these schools so I thought it was the right thing to do.  It is IF your child is academic - if they are not -it's a BAD move (hindsight is a wonderful thing).  

I should add in here that I went on to get all my qualifications post 16 - apparently I wasn't totally thick, I'd just had a horrible childhood and ended up in care.  So by the time I got married and had my first baby at 26 I was raking in a fairly hefty wage for kid who'd left school at 13!  I'd worked for some big blue chip companies and I'd turned myself around.  I'd also worked for this English grammar nut job in a Corporate Lloyd's Commercial Insurance Company and that woman though she annoyed the hell out of me - taught me how to write! Kind of . . . I'm not as good as her - I hasten to add - I'm sure it shows.

Continuing on . . .  In this school the "headless chicken syndrome" continued and he ran around and wasn't really able to fit in.  I thought that he was Autistic from about this time. He fitted with all the symptoms of Autism.  I took him to a consultant and they did a full assessment of him.  The upshot of that was that they found he was ADHD with Autistic Traits and this was the diagnosis.  The ADHD really surprised me because the only symptom he had of ADHD was the running around.  Everything else was Autistic.  However the school filled out questionnaires which didn't correlate with my own and the Consultant went with theirs.  I was really upset about this because I'd known him since birth and the school had known him for 6 months but unfortunately more often than not parents views are ultimately trumped by the professionals - it's how it is and if you are at the early stages of raising a child with SEN you'd better get used to it!

Despite my vocal protests there was nothing I could do and I was stuck with the diagnosis.  I'd worked out by then that you were better to have a diagnosis rather than not have one and I so I skulked away not very happy but got on with our lives.  I couldn't go against the doctor.  I was just a nobody and only a parent and what did I know really?

So he was put on ADHD meds which I hated.  I've also changed my mind about those since but at the time I hated them and felt like I was drugging my child.  All of this is a very normal reaction from parents but if your child does have ADHD, like really has it, then it's misinformed.  My view - I don't expect everyone will agree and they don't have to.  I'm not here to change anyone's minds, I respect the views of others and I'm just speaking my truth from my experience.

So this went on.  I then moved again (I was also scaling the property ladder during all of this).  This time I moved to a bigger house but in a not so good area.  I put my kids in what I thought then was the worst school in the world.  Shocking Ofsted reports etc etc. Ha! How wrong I was.  The shocking Ofsted reports were borne out the school having a high number of children who didn't speak English as a first language and kids from a lower social economic background - lot's of kids with SEN as well.  This school was the most loving and nurturing environment for my kids and was amazing!  From that point on, I've always reserved the right to be wrong!

My son managed at this school because they had the good sense to give him one very very experienced TA who was a tough cookie and she protected him from everything.  No one messed with her - especially not all the other kids.  She stayed with him year after year until he left the school in year 6.

Mummy dearest here :( reverted to type and decided to send him to a very sought after secondary school in the Borough! Ding Dong! Big Mistake.  Sometimes I do have to make mistakes twice to truly learn.  I am kind of hard wired that way I'm afraid - I've been married twice as well!  It's a theme, I own it.  So he went to a summer camp at this school and they didn't provide him with a one to one TA.  During the camp he was tormented by some other children (he had no social skills) and he sat in the camp and cut off all of his hair and no one noticed.  He came home very distressed and I was horrified to see the missing hair cut out in chunks.  Horrified that none of the teachers saw it either.

Quick u turn and decided not to send him to the school.  Realised he wasn't going to cope.  I had to make a quick decision as it was August and his secondary school year 7 started in just a few more weeks.  I didn't have much time for research so I sent him to a special secondary school which is maintained by the LA.  Went to visit the head prior to his joining.  She'd read his statement.  Sat in her office and my son was there as well.  She and her colleague (a very experienced SALT) kept looking at each other and after a bit the head said to me "I'm very puzzled by the ADHD diagnosis, your son presents as more ASD than ADHD".  My husband and I burst into tears.  Tears of sheer relief that finally another professional saw what we saw.  They told us that they would get the diagnosis looked at.  I came out of that meeting on cloud nine.  We thought that finally we were going to get him the help that he needed.

We were wrong.  They didn't do anything at all.  They put him in a class with 9 boys with ADHD who to cut a long story short "ate him alive, chewed him up and spat him out".  He started having panic attacks in the morning going to school and mentally started to deteriorate.  This boy who was once a nice boy at home previously became a monster.  I blamed myself, I didn't know what had caused the change.  I didn't think for one minute that it might be the school he was in!!  We looked at ourselves, we looked everywhere apart from the source of the problem - the school.

The school sent out a behaviour mentor to help us.  My son is mixed race, I was married before and I have 4 children from my previous marriage of ten years.  I am remarried and my second husband is white - we have been together now for 9 years.  When the behaviour mentor came to my home she was obviously expecting to see a black dad there.  I could see the surprise on her face - she wasn't very good at hiding it.  Her conclusion as to the cause of his sudden spike in behaviour?  He wasn't getting his black history from me and his step dad!!!!!!!!!!  I'm not going to comment further on this ridiculous statement other than to say it's well frankly ridiculous.  She lost all trust and credibility from me from that point forward and I'm afraid to say I've had an awful lot of this.

Finally after much nagging I got an EP in to see him.  The EP was clearly a very good one and highly experienced.  He wrote this lovely report on my son and sent it to me as a draft for my comments.  Thing was, the report kept on saying blah di blah is consistent with X's ASD diagnosis, over and over again.  I phoned him up and said "Dr X, you do realise my son is not diagnosed with Autism don't you?"  The line went silent for a long time.  No he didn't realise he wasn't Autistic and he so obviously was Autistic - so much so that this EP wrote a whole report on it.

This was a blessing and divine intervention if you want to call it that!!  After that he was diagnosed with Autism very very quickly and our whole world and his changed for the better.  The school did not respond to his needs - he continued to become more and more psychologically unwell and in the end I took the drastic step of pulling him out of the school.  This wasn't done lightly and many meetings happened before that to try and put things right.  I felt that I had to do it in the end for his own welfare.

There is a happy ending to this story.  The LA agreed to place him in a private Autistic school and he has been repaired there and gone from strength to strength and is the happy boy again that we once knew.  I will tell you, the whole thing was a nightmare and it all came out of the Autistic Traits diagnosis!  I wish to God that I had fought harder to challenge it when he was five.  I felt out of my depth and alone and like I couldn't argue or challenge the doctor.  Please dear God, if you are a doctor reading this - please think carefully about the Autistic Traits diagnosis - it caused my son and us such pain and suffering.  I think it's far better to keep reviewing a child until you are sure rather than label them with "Autistic Traits" because Autistic Traits is not Autistic and the child cannot access the right level of help with this label.

Autism is a spectrum disorder and if you have traits then you are surely on the spectrum?  Also ASD can present like ADHD in young children who are over stimulated by their environment.

The cynic in me (yes I have become cynical in my old age) believes that it has to do with budgets and money.  Autistic children cost a lot to educate and so the diagnosis is not given lightly.  I may be wrong.  I reserve the right always to be wrong and where I am I will promptly admit it. 

By mummytosix 26 Feb, 2017
I live in a Tory Borough.  On the one hand this is good news because the council have 311 million sat in the bank.  On the other hand it means that those in charge of the purse strings are likely Daily Mail reading types.  The Daily Mail and other right wing media outlets do not like ADHD and peddle all kinds of twaffle about it.   This feeds down into the general population and this creates a problem for a parent with an ADHD child.

I have 5 children with disabilities and SEN and some of them have nice respectable diagnosis like Autism, Blindness and Cerebral Palsy.  These conditions are widely accepted as deserving of some sympathy and support.  ADHD isn't.  There is a misconception that ADHD is borne out of bad parenting.  Now surely if that were true then all 6 of my children would have it?  They don't.  It's also viewed as an affliction affecting the lower classes and the out of work and feckless of our world.  Lot's of horrible documentaries depicting this.  This also isn't true.  

So if you've been given this diagnosis for your child then you have some battles ahead.  First off, many professionals subscribe to the Daily Mail type thinking on the subject.  I have been told here in the Wandsworth Borough by social workers, EP's and teachers the following:

"It isn't a recognised disability" - social worker
"It's a sign of bad parenting" - social worker
"It doesn't exist and it's wildly over diagnosed" - Educational Psychologist
"We don't give much SEND support to children with ADHD" - Senco

All of this is absolute nonsense.  It is a recognised disability and any solicitor will confirm this.  It's not a sign of bad parenting (if it were all of my children would have it).  It does exist.  I agree that negative parenting techniques can make it worse but it's not a condition borne out of bad parenting.  Bad parenting will make any child worse - not just the child with ADHD.  It is deserving of SEN provision as being afflicted with it seriously affects a child's ability to learn.

You will also hear the cries of the oldies who will say "In my day it wasn't called ADHD - you were just a naughty little g**".  I mean really? years ago people threw vegetables at people with Cerebral Palsy and black people had to go different schools - we don't do anything like that now but hey ho (!) apparently the same logic doesn't apply!

This is what you are up against though.  Some will not have the bare faced gall to say it to you but some most certainly will.

So I have a son born at 30 weeks - 10 weeks early.  Children born extremely prematurely will be much more likely to have ADHD.  This son has had an entire primary education riddled with problems.  "Lack of attention" and "could do better if he just focused" is written on pretty much every school report since he was in nursery and I have copies of them all.   The behaviour side of things, EP's describe as low level silly distractive behaviour - nothing too heinous just disruptiveness.  It's not that his behaviour is serious but it's constant which is just as irritating.  This has resulted in him being excluded from school many times and I have records of every exclusion, a copy of every time he's been put into a behaviour support unit.  To make matters worse despite being identified as having ADHD at age 7 by the ADHD team - he wasn't actually diagnosed with it until age 14 despite my trying to follow it up.  My son therefore went this whole time without treatment and without any recognition of his difficulty.  Due to lack of attention he has fallen further and further behind and this has chipped away at his self confidence.  He has been given hundred of detentions for the symptoms of his ADHD - forgetfulness, lateness and disorganisation.  Even we as parents have chastised him for the traits of ADHD prior to diagnosis.  He's been in two of the best schools in the Wandsworth Borough and has been on SEND support since he was five.  Please do not get me started on SEN Support!!!  SEN support is a lovely idea and it kind of works in primary school.  There are several issues with it:

1) There is not enough money in the SEND Support budget to help children and so SENCO's target the money understandably toward the most severe cases that probably should really have EHCP's.  I know I've done FOI requests to prove this.

2) They are reluctant to identify children with additional needs especially those presenting like ADHD because they know there is not the money to help those kids.

3) Mainstream schools do not have the skill set in teachers, TA's and Learning Mentors to effectively help the child with ADHD.  It requires a higher and much more specialist skill set which costs more money.  To become a learning mentor you only need a couple of GCSE's and you are then charged with the job of helping children with emotional and neurological problems which people go to university for many years to understand - you can see the immediate problem there I'm sure!

4) Mainstream schools especially secondary schools are completely at odds with children affected by ADHD.  The environment of ever changing lessons, ever changing teachers, stopping and starting and the requirement to organise yourself in terms of homework are completely at odds with ADHD and children with ADHD cannot flourish in these environments.

My local authority have a criteria for starting the EHCA process.  They carefully describe the symptoms of many of the more 'deserving' diagnosis rather than naming them.  Naming the conditions would create a blanket policy which they are strictly not allowed to have.  Strangely attention deficit is not described in the qualifying criteria in this Borough.  Autism is described at length, so is Cerebral Palsy and Severe Visual Impairment.  I have two Autistic children, two with Severe Sight Impairment and one with Cerebral Palsy and that's been great for them!

I applied for an EHCA for my ADHD son last September.  The LA immediately identified his case as being borderline (I strongly suspect that is because he has ADHD).  This is despite copious amounts of evidence I provided to them to consider when deciding whether to proceed with statutory assessment.  The ignored it all and focused on what the SENCO said about him.  She said he was only having problems once per month and this is the reasons they gave for refusing to assess.  This is despite the real hard evidence I provided that showed this wasn't true.  I had behaviour logs from the school which showed 26 level 2 incidents in a two month period for example.  The SENCO had played down his difficulties - she was the same person who told me that kids with ADHD will not get much support at her school.  That is another issue and I won't go into that here any further.  Not nice though - not very nice at all.

So the powers that be at SNAS said that they would like an EP to update their assessment of my son before going ahead with a statutory assessment.  I pointed out that this was a bit of bizarre concept since effectively they were wanting to do an assessment before an assessment?  It was quite laughable.  I pointed this out and they changed their minds and agreed that a tribunal might find it odd that they want to do an assessment before an educational health care assessment and they agreed to go forth with an EHCA.  However!!  They also reset the clock on the statutory time frames from the date they changed their minds - this was completely illegal as per guidelines in the SEN Code.  To this day they won't answer my objections about this despite my asking on which ground they were resetting the clock as per the four very specific grounds set out clearly in the SEN Code.  

There are only four grounds in which they can reset the clock on an EHCA (or delay):

Link to the SEND Coode of Practice 2015:  https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

9.42   Where there are exceptional circumstances , it may not be reasonable to expect local authorities and other partners to comply with the time limits above. The Special Educational Needs and Disability Regulations 2014 set out specific exemptions.   These include where:

• appointments with people from whom the local authority has requested information are missed by the child or young person (this only applies to the duty on partners to comply with a request under the EHC needs assessment process   within six weeks )

• the child or young person is absent from the area for a period of at least 4 weeks

• exceptional personal circumstances affect the child or his/her parent, or the young person, and

• the educational institution is closed for at least 4 weeks, which may delay the submission of information from the school or other institution (this does not apply to the duty on partners to comply with a request under the EHC needs assessment process within six weeks)

9.43   The child’s parent or the young person should be informed if exemptions apply so that they are aware of, and understand, the reason for any delays. Local authorities should aim to keep delays to a minimum and as soon as the conditions that led to an exemption no longer apply the local authority should endeavour to complete the process as quickly as possible. All remaining elements of the process must be completed within their prescribed periods, regardless of whether exemptions have delayed earlier elements.

Please note: There is no legal timescale of when to  issue an draft EHC Plan within the 20 weeks however unofficially it’s around week 14 from receipt of the request of the EHC Needs Assessment – in order to allow for parents/carers to respond to the contents and ask for particular schools/settings.

Unfortunately the SEN Code is not something that is given much regard where I live.

So my poor son is still struggling at school in the meantime.  His school offering him cooking sessions once per week and a learning mentor for 15 minutes once per week in response to his SEN under SEND Support.  This wasn't helping and the problems continued for him.  We kept asking for this to be reviewed and we were totally left out of it.  Under SEND Support there is supposed to be some assessing, planning, doing and reviewing going on and it's meant to involve the parents - pretty words I'm afraid - meaningless in most of my experience.

I pleaded with senior members of the council for TAC meetings to address the issues - these fell on deaf ears and my requests were completely ignored.  My son is also a child in need as per the Children's Act because he is disabled and because he has an awful lot of disabled siblings.  He is subject of a child in need plan for goodness sake! No one did a thing.

The EHCA process has been very badly handled and is now well outside the statutory timeframe.  The LA EP, whilst lovely wrote one of the most vague EP reports I've ever read - with recommendations all fitting in with the school's ability to provide provision.  This is also not supposed to happen, the provision is supposed to be written with regard to the outcomes and not written to fit in with school's scope or limitations to provide that provision.  The LA sent off for a report from the Consultant in ADHD which was never shared with me until I asked for it and this was way after the EHCA had nearly reached it's conclusion.

It's difficult for LA EP's because it's human nature not to bite the hand that feeds you.  I do sympathise with and totally get that.  I feel slightly worried about writing this blog because it might affect the other provision that I do get.  However, I will continue despite these worries but do it anonymously because given my experiences it would be quite stupid not to.  In hindsight I should have paid for private EP assessment and this was a big mistake - I see that now.

So in December seeing my son becoming more and more crushed by the system he was in I took the decision to de-register him and home educate.  My other children all attend school, I'm not one of these parents who is strongly pro home education.  However, if it's a choice between SEN needs not being met and being at home, then being at home it's got to be!  Strangely enough since I have done this the behaviour has stopped and he has gone from being 40% below average in the three core subjects (English, Maths and Science) to being at average levels.  He is EP tested as being of average intelligence and so is perfectly capable.  Despite this average intelligence he finds himself in all the bottom sets at school for years with other SEN kids, kids with behavioural problems (likely other children who are undiagnosed).  The thing is my son is 15.  I don't have years to play with.  The LA know that and so I believe they are using delay tactics with me.  They delay and delay - don't respond to me when they should and leave the weeks rolling on and on.  The more they delay the closer he gets to 16 years of age when they can wash their hands of him.

I pointed out that I only home educated as a temporary stop gap while the EHCA played out.  Once this became excessively delayed I asked at senior level for suitable interim provision to be provided - this has been ignored .  I phoned the EWO in charge of home education - nothing, no response at all.  So I'm now forced to carry on home educating when I've made it clear that I don't want to and this is all while the LA keeps on delaying.  I believe that this is negligent of my son's special educational needs.

Meanwhile my son is at home when he should be at school with specialist help.  I don't really have the resources to home educate because I have 6 children and 5 have disabilities.  I'm doing my best and my son is improving but it's not the way to go on.  Home education was only ever meant to be a stop gap while the EHCA played out and I made that quite clear at the outset.  However this legal process is delayed and delayed due to staff holidays at the council (they are not mentioned in the SEND code as good reason for delaying statutory assessment ) and lots of other equally lame excuses.  Keep in mind that there is a legal duty on the council to assess my son in specific timeframe.  This is just openly disregarded and they just resign themselves to it not being possible to observe the law and they tick on week to week happy to let it take as long as it takes.  I think when a child is out of school and is a 'child in need' that a bit more priority should be given - apparently not.  I will update the blog with progress as I go along.  I also haven't even begun to start blogging about other issues - this is not just about ADHD though ADHD is relevant to me at the moment.  I have lot's to say about social care, therapies and aids for disabled children.  I have a whole lot to say about Special Needs Assessment, Disabled Transport, The Local Offer and The Children's Act!

I have 5 EHCP's on the go at the moment - one is an annual review, two are transfers from statements and two are EHCA's - they are all beset with delays and haven't been handled properly.  It's funny, in my daughter's EHCA where the school are totally supportive that is all going quite well.

The other oddity is that prior to my children's EHCA's being completed senior management booked both of their cases into their panel because they predicted that at the end of the EHC Assessment they would be contentious cases - they both have ADHD strangely enough.  Decisions are not meant to be made ahead of assessments - yet they routinely and absolutely are.

I suspect that both children's cases will fail and I wholly believe that this is because they don't have gateway diagnosis.  There is a clear blanket policy going on, disregard of the SEND code, breach of statutory duty and it breaks so many laws I cannot begin to say.

I trudge on with bruised optimism and often bucket loads of despair and frustration.  I am still caring for the children everyday on top of educating myself in SEN Law and building my case.  Not to mention the chasing, the chasing, the chasing of the local authority which would drive any sane person crazy.  The wicked thing is that if I had £7k to spare I could save myself the grief and get a solicitor to wipe the floor with it.  Sadly I don't and so it's just me, myself and I!

God loves a tryer though and I'm sure the council will agree with me when I say that I am certainly trying ;) 

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