The wolves in sheeps clothing

diability pic

Yesterday six years ago, Jan 18th 2012, we went to tribunal to try to get Dylan funded ABA therapy at home. Yesterday, Jan 18th 2018, we went to negotiate Dylan a placement at college, back in a fairly standard education framework.

The ironic thing being that just as it was painfully difficult all those years ago to successfully ensure Dylan could have an education out of the special education system, here we are six years later having an equally difficult time trying to get him BACK into the very same education system.

SEN (or special educational need) education is a different world to typical mainstream education systems, and I don’t just mean the schools. Special schools are the shop front of special education but there’s a whole maze of departments and procedures weaving its way in the background, difficult to infiltrate and even harder to make sense of.

Take our current situation – Dylan has an EHCP, this was set up in August with Home education named as his educational placement on the agreement that once a college placement was found this would be amended. Since then, yes six months ago, the local authority has been exploring and deciding if a placement can be sought for Dylan.

We have visited our local college and explored the provision, yes pupils can be accepted as young as 14, yes a part-time placement can be agreed. But no, nothing is ever finalised.

Over coming weeks and months emails are sent but no response received, voicemail messages left at departments but no calls returned.

Then finally a day or two before Christmas we received news – out of the blue – that transition to full-time college in September could commence. Dylan’s case has been to panel (as a parent I didn’t know this was happening) and funding finally agreed. Next step was to hear from the college directly with how to move forward.

Christmas and New Year passed and yesterday we went to visit the college again to get a feel of where we think Dylan might be best suited within the wide, wide scope of provision and needs catered for within the college setting.  The visit was informative and bright, finishing up with a talk with the programme leaders about the next step.

Well this is where our next couple of obstacles arise, in a very much ‘chicken and egg’ scenario – It is all such a muddle in my head that I’m not sure I can get it down in words but, I’ll give it a go.

***1*** To access college Dylan needs 1-2-1 support from a familiar adult. This is stated in his EHCP and is apparent to just about anyone who meets Dylan (as they haven’t got the foggiest with how to interact/understand him.)

LA – AGREE (its in his EHCP)

COLLEGE – AGREE (They understand that Dylan needs familiar adult with him)

PARENTS – AGREE (Absolutely, no doubt, Dylan would be so anxious without this)

***2*** Dylan needs to transition from his home education setting and lessons to a more structured setting of the college, this will take time and requires sensitivity to avoid Dylan becoming too anxious or stressed and internalising his concerns (thus setting him back emotionally and psychologically; which will have a knock on effect with his ability to learn)

LA – AGREE (Again, its in his EHCP)

COLLEGE – AGREE (They have seen EHCP – no questions raised about this)

PARENTS – AGREE ( Agree- we know Dylan, its part of his personality and well documented)

Now despite the fact we can all agree on these two point above the only people who are able to fulfil the criteria of knowing Dylan well enough to facilitate his smooth transition to college are us, his parents. That is why we were able to write his EHCP, that is why we have successfully taught him for the last 7 years and have him now in a position where he could potentially access another educational placement. We can do this.




Now this is where it gets confusion but try to bear with me. The best thing for Dylan is to have someone familiar with him to aid transition, transition being the process of moving from something he knows to something he doesn’t. College has responded to the fact that we don’t have anyone fitting this description apart from us as parents by advising that we go to a care agency or advertise and employ someone.

Now without wanting to sound difficult or obstructive, I have a number of issues with this.

1 – The cost of employing someone for a full college day (8.30-4.30 at approx. £15 an hour equates to £120 a day, add-on to that employers NI contributions, holiday pay, sick pay and we are looking at possibly excess of £600 per month.

2- We have approached family members, previous neighbours, previous tutors, friends of the family and others to try to locate someone who meets the criteria of ;

*knowing Dylan or his situation in some sort of capacity

*caring disposition

*free in the week when we need them to be to physically attend with him for the full day.

So far – no one has met all three criteria.

3 – The colleges suggestion of employing someone from an agency is flawed in multiple areas :

  • It will be someone new for Dylan, we as parents (already working, home educating and a busy family of three children) will need to find the time and resources to screen and interview carers, employ them, pay for them to spend time getting to know Dylan so that he can then access college and have to prepare for further change in September when he could go full-time.
  • The time this will take will be a waste of the placement that is already there waiting for him, it’s a waste of money to have someone paid to take him to college when Dylan’s Dad is more than able to do so and so far it seems from the lack of response from the local authority it will be us as Dylan’s parents footing the bill for the carer.

(Are you still with me? I’m angry typing now)

So what if we don’t do what the college say and employ a random carer?

Well then Dylan can’t attend his educational placement of our choice, one that could help him prosper and grow, one that could offer him friends and a change of scenery. Teenagers all need time away from parents and family to allow them space to grow, college could be this for Dylan. Its more than just education, its more than we can offer as parents. He really needs this.

But do you know what my biggest bug bear is, the wolf in sheeps clothing;

The ‘integration’, the ‘We understand special needs’ and ‘I’ve worked in special ed for 12 years’ but when it comes to the crunch, a reasonable adjustment is too much to accommodate unless it’s on their predetermined terms. It’s truly the worst case of discrimination.

Discrimination or lack of understanding is hard enough coming from those who are ill educated, simply don’t understand or are naive. However, these people can be educated, they can be shown and are often willing to learn how different things can be for others.

The ones you have to watch out for are those who conceal themselves under the cloak of years of training and disability awareness seminars, those who immerse themselves in policy, previous experience and prejudgment. It’s these people who subtly discriminate by losing sight of including the individual because they are so damn self-assured that they know all about the condition they don’t even see the person or their needs anymore. They spend a lot of their time hiding behind voicemail answer-phones and generic email addresses, offering fake support and guidance without any transparency, without giving the full picture, all while withholding knowledge, information, guidance and resources.

They’re the ones to watch for.

And that is the extent of disability discrimination within our education system; wolves in sheeps clothing.





Reading challenge

Dylan’s been going to the library since he was tiny. It’s always been a place full of anxiety.

Too quiet, too much attention to behaviours and too many tall aisles to get lost down.

The younger two have always seen the library of a place of learning, knowledge and information. It’s strange how two people can see the same thing so differently.

Dimensions have a new campaign to make libraries ‘autism friendly’. Which is an excellent idea.

Every year the library do a reading challenge where a child endeavours to read six books of their choosing within the six weeks summer holiday. After reading each book they visit the librarian seated within a speacial little nook to discuss the highs, lows and lessons learnt from their chosen read.

Josh and Grace have repeatedly year after year completed the reading challenge but this year is Dylans first year. It took a while for Dylan to understand what the librarian was asking him of the book but with time and gent lesupport from Dad he was able to complete the first element of his reading challenge by answering the librarians questions.

Reading challenge 2017; Its different but its do-able.


Well done Dylan 🙂


Tribunal, statements and now EHCP

Tribunal day was 18th January 2013. Fast forward 4 years after losing it but Dylan and his progress is still going strong. 

I received a call from the County Council today to start the ball rolling for Dylan to transfer to a EHCP. The EHCP -Education, Health and Care Plan- has been brought in nationally within the UK to replace the previously used ‘statement of special educational needs.’ 
We maintain Dylans statement of SEN as a warped safety net for if Dad and I are no longer able to continue ABA or home ed.
 There is no way Dylan would go back to a local school without me being very, very involved throughout. 

It is my experience the SEN education system is full of uncaring penny pinching fools. 

After attending tribunal to appeal the lack of support for Dylan being at home back in 2013 we waited 7-10 days to receive the news that we had lost and that the local school we had removed him from was deemed suitable, regardless of how far Dylan had progressed since leaving it. To lose after all that hard work of appealing was gutting to say the least, however we were aware that even if we had won we had an annual review booked in the following Feb. The education authority could have taken any provision gained at tribunal away, only 5 weeks after us winning it. 

The system is so messed up that they would have been well within their rights to do so and we would have had to endure the whole 12 month tribunal experience and expense to claw it back. 

A heartbreaking situation. Thankfully we decided to cut our losses and apply all of our focus where it mattered. On Dylan.

That was 4 years ago and I still feel a huge sense of injustice at the warped system of SEN assessment and provision. 

No other public funded service governes itself and has no one to answer to like the SEN system does. 

The reckless decision making and inadequate assessments are not permitted without justification – not in the NHS, not social care, not even regular education is run this way. But SEN teams make their own rules. They play their own merry tune and as a mere parent you have to dance to it. 

SEN teams can make life changing decisions about children and situations that they have never encountered and there is no one to question these decisions that have been made. 

Unless you go to tribunal.
 So £6000 later and potentially nothing gained. We had it confirmed; the system stinks, it’s corrupt and preys on the vulnerable. We burnt every last report, document and assessment. It was like therapy!

However since then I have happily reduced interaction with the education authorities as much as possible but the looming EHCP will not allow me such pleasure. 
The whole assessment process involves Dylan’s education being cut back to the bone and every little bit of progress and success being played down in an effort to confirm Dylans difficulties so that he can receive maybe part of any help that he needs. 
The prospect of selling my dear boy out to ensure the provision he needs is potentially safeguarded fills me with hate. 

Hate for the negative reports. Hate for the judgements. 

Hate for the whole system. 

It’s going to be a long couple of months.


Proprioceptive Dysfunction: Blankets

Just out of interest I asked Josh and Grace;

‘Dylan always has a blanket on his head or his hood up or his head covered; do you know why?

Josh felt it was because the light might hurt Dylan’s eyes or maybe he wore it as he was worried about loud noises which might make him jump.

Grace felt that Dylan might be cold and so used it to keep warm.

I explained the insight that Dad and I got from a recent talk about Proprioceptive Dysfunction. For those not aware of the Proprioceptive sense it basically means to have an awareness of our own bodies in space and time.

– We know where our hands are without touching them.

– We know we are upright when standing and for example can easily gauge when there is a slope of step when we are walking. For this we can plan for the motion of adjusting to our environment as we are aware of where our bodies are in space.

Dylan has a dysfunction with this system. He will often appear to be “limp” and lethargic all the time despite being very active. He will frequently bump into objects and people accidentally and will trip and fall often, this is all due to him not being aware of his limbs or feeling able to maintain awareness of where he is in relation to himself or anywhere else. All elements of this affect his confidence and ability to integrate with others.

To explain this to Josh and Grace I used the example of our faces and heads.

‘How do we know we have a nose or a head on our neck without reaching up sand feeling it? – We just do, because we have this ability to sense it. Dylan doesn’t have this so much so maybe having a blanket over it helps him feel grounded and safe, so he knows where his head is.’

Both Josh and Grace looked at me thoughtfully, smiled and accepted it as a little nugget of Dylan wisdom. 

Another little step of understanding.


A New Year, A New Month, A new ABA Meeting.

This year is really moving forward with plans for independence. Microwave meals, shopping, developing further independence with the coffee shop, moving tasks to unfamiliar shops and cafes to generalise skills. It’s an exciting time, albeit a bit out of our comfort zone but it seems that with every step forward there’s a splurge of dangers and unpredictability.

For example – Microwave meals, a fantastic concept in the future that Dylan can go to the shop, buy himself some microwave meals and then come home and feed himself; that would be marvellous and will make himself sufficient for a couple of hours!

The plan is to get Dylan being as independent as possible, not a difficult one you may think. However within the first 5 minutes of unpacking the ready meals there are a range of dangers which we realise all need to be managed or will require extra teaching programmes.

Firstly, pricking the plastic lids. Dylan doesn’t have the coordination to force his physical strength on the fork through the plastic lid despite trying but failing, he then defaults to picking up a rather large serrated knife to try with– ‘No no no Dylan!’

REALITY – We need to work on either directing more force on the fork or persevering with the wimpy pricking of the plastic until success. Otherwise he will lose focus and require adult intervention to continue with the meal prep thus reducing his independence.

Next is reading the instructions – when planning this it was described as Dylan seeing the number of minutes on the back of the packet and setting the microwave accordingly.

REALITY –  On the sleeve of a meal there is oodles of instructions, ingredients, descriptions and options often to either microwave or oven cook – Can you imagine microwaving a ping meal for 25 minutes??! It’ll be dust! 

So again this will need teaching – to pick out the minutes required, to identify if the item is to be microwaved or oven cooked and if so then on what setting.

Then we come to the microwave, Dylan has no electrical safety. He, as far as I am aware, does not know about the dangers of metal and microwaves.

REALITY – The health and safety risks are huge and if he is to be fully independent then he needs to be taught about electricity, the dangers and how to deal with them.

All being well, the microwave pings and the food comes out; Boiling hot food. Dylan needs to coordinate handling the hot container with a tea towel and bring it over to the plate. He needs to carefully remove the plastic wrapper – which is not an easy feat at best- and avoid being burnt by the escaping steam. 

Food and plate and go eat. Done.

In addition to this, even if he does everything right but by some unfortunate circumstance the fuse blows, there is a mechanical malfunction, the food catches alight or the food comes out uncooked; What does Dylan do? We have to teach to cover every eventuality? I feel exhausted at the concept.

However more and more we are finding this; lessons and tasks need to be broken down further and retaught to cover variants and build confidence in situations which ultimately cannot be regulated nor controlled.

Exciting times brings with it trepidation.