Some days, seem to last forever

UPDATE : So we got home to a message on the answer machine, apparently the social worker did not feel comfortable with how our conversation was left and although I have her contact number she wants me to ring her back to discuss. Fearing that I may have ballsed things up with my emotional outburst earlier (because thats how they work – make you feel neurotic) so I rang her back.

Turns out she doesn’t want me to feel negative about our conversation, she isn’t comfortable with that. She insists on arranging a meeting even though she can’t specify why or which assessment or report we need to meet for. I give in, not wanting to appear obstructive and we arrange a date for mid March, I agree to the first date she gives me as available.

‘What time?’ I ask,

‘Well,’ she says ‘Lets make it late afternoon, so I can meet Dylan after he gets home from school, that would be nice.’

‘Erm, time doesn’t matter, Dylans home schooled’

‘Oh? Is he? You have him home with you all day, everyday?’ she questions
‘Maybe we should try and review how much support you’re getting then….’

Dear God give me strength.



Some days.

Some days it all feels too much.

Just had the most bullish, uninformed, insulting and deceitful encounter with a social worker. She reduced me to tears and poor Grace who could see the 40 minute phone conversation escalating kindly went upstairs to distract Dylan so he didn’t have to hear me talking about him.

She made me cry, on the phone, both with sadness and fury in a way which even now recounting it has made my eyes sting and my throat tighten.

The biggest fight is not with autism but with uncaring power-hungry professionals who are embroiled in a nasty system of beating you down until they pretend to be able to offer assistance.

She lied. She said that I need to appear depressed, I need to cry and tell her I cannot cope before she will complete her paperwork. She told me that I have a parental responsibility to pay for Dylans extra requirements due to his autism and I can’t expect the council to help.

During the conversation she said that she would come and visit. She was assess Dylan. After all, she should meet Dylan. I told her she had, back in August. She said she didn’t remember and I need to provide more info for her report. I need to give them further breakdowns of finances and list Dylan’s needs, not just those already documented on previous reports. But more. more. more.

I snapped and told her to shove it.

Through sobs I told her she was the only element of my life that makes me feel depressed, or cry. She works for a system which is selfulfilling and destructive to the tranquillity of our family who pull together to make our lives work.

The whole phone call was about her needs, her report, what she or her panel needs. I told her in no uncertain terms my priorities: Dylan. My family. Keeping things going.

And that her and her requirements were not helping. Not only do I not want an increase of support I would rather withdraw from any support. To lose payments would be easier than trying to jump through their many hoops but that’s Dylan’s payments and the only way he can access some life outside of home.

I gave it to her both barrels.

Came off the phone and sobbed. Nothing resolved, only frustration.

So now I’ve taken the kids out. I can’t cry in public so I decided that being outdoors is best. Dylan’s having his iPad screen fixed so we’ve nipped over to Costa for some overpriced lunch.

This is what really matters.


Fine dining

A night out with Dylan and I could burst with pride at his new found enthusiasm for going on a Wednesday.

He starts planning from the week beforehand and now has a variety of places where he will go and eat, and it’s all totally his choice.

This week is Bills Restaurant.

Tonight is a later evening than usual and a predominantly adult environment. Dylan’s on his best behaviour and ensuring that after taking a huge glug of his coke he ensures he puts his hand over his mouth before releasing his immense belch.

Every. Single. Time.

So glad he has manners 🙂


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.





New year, new menu

Navigating a new menu and trying new options can be tricky. Dylan copies the new words from the menu to his iPad to try them out. 

If he likes them they get added to his iPad as potential vocabulary, much like a mainstream toddler learns  new words and language from the environment around them. Dylan’s way takes a bit longer but hey; we have plenty of time!


Open letter to John Caudwell

Dear Mr Caudwell,

I am writing to share with you this simple picture and express my lifelong gratitude to you for being involved in its creation.

The picture is of my son Dylan partaking in one of his favourite activities, eating chips. This picture may not appear as wonderful as I am portraying it but please bear with me as I go back in time to the beginning; believe me when I say, for me, the story behind this picture is nothing short of amazing.

See, aged 3 Dylan was diagnosed as having autism. He was non verbal and didn’t engage with anyone, he attended specialist provision throughout his education. As parents we always expected more from the education system he was attending and, as so many parents do, we researched what else we could do to help Dylan.

Fast forward and Dylan had been in the education system for four long years, he was becoming increasingly anxious and withdrawn. He was still non verbal and becoming frustrated with his inability to communicate. He would hide his school uniform, displayed worrying behaviour and a range of unexplained injuries, we really feared for his future. Looking back now still makes my blood run cold.

We felt trapped within the system; We were told by professionals that we were ‘doing all we can’, ‘Dylans getting the best support’, there was no-one who could help us and we felt as a family we were rapidly losing Dylan as he withdrew further and further away from the real world.

Throughout my research to learn more about autism and how to help I found many suggestions for therapies which could help Dylan. One really stood out as being logical, individualised and effective however also hellishly expensive. It was with further research that I found your charity, Caudwell Children, a charity which helps change the lives of disabled children by many means, including allowing part funding for the ABA (Applied Behaviour Analysis) therapy which we so desperately needed to help Dylan.

Thankyou Caudwell Children for your support for the last 6 years. That’s right, for 6 long and reliable years you have awarded Dylan a grant to help cover the costs of this therapy. The work that has occurred with your financial support is nothing short of miraculous! I could go on for ages telling you examples of the difference that this therapy has made but instead I think the picture below encompasses it all.

You see, Dylan used a communication device to request his beloved chips.

He stood in a queue and waited his turn.

He made eye contact with the lady serving and paid for the chips himself using a prepayment card which he has learnt to use.

He then sat himself down and waited patiently for them to arrive and thanked the waitress again with his communication device.

He then opened and poured a small sachet of salt onto the chips and ate them with a fork.

The skills used for this were not taught at school, nor were they part of the planned curriculum, prior to ABA therapy we were told that because of Dylan’s autism he would have to live without these skills as he was incapable of being taught them. With your help these tasks have been taught tiny detail by tiny detail to provide Dylan with skills that will promote his independence for the rest of his life.

We simply could not have done this without your help.

Today, Dylan is so happy, still with only emerging verbal speech but far less anxiety. Dylan is becoming more socially interested in others, no longer fearful of the outside world. He is learning to use his communication device to talk to people and potentially ask for help.

A dear hope of mine is that one day that Dylan will have friends.

All of this; the progress for him and our positivity for his future is directly attributed to Dylan’s ABA programme, the combination of his wonderful consultant who directed his curriculum and yourselves as a charity for making it a reality.

Sadly the decision was made as an organisation to cease funding for ABA and so after Christmas Dylan will no longer receive financial support from Caudwell Children, I understand that you have reasons for this. Luckily for Dylan the seeds of knowledge and positive learning have been sown and we as parents will endeavour to continue this stream of development ourselves to the best of our ability.

As a parent of a child with autism, since Dylans diagnosis I have had many bleak and worrying times however I doubt many moments will feel as dark as the moments prior to us removing Dylan from school. To have the ABA programme that you helped fund for him to move onto and the magic that has occurred in the last six years due to it has changed all our whole family’s  lives and enlightened the darkness.

Dylan’s future is positive and, so much that would not have been possible for him now is, because of your financial assistance. And for that, I thank you.

With kindest regards.

A proud mumma



Do the maths

Dylan has started Doodlemaths. 

Doodlemaths is a maths based app. Its set on a pretty easy session (approx age 5) but Dylan is expected to use this app to complete a bit of independent learning everyday.

For him to sit quietly and attend to a relatively non motivating task like this is awesome AND good maths practice and generalising of skills.

Yay Dylan!!


One of those days….

Life passes so quickly. As the nights get longer and the evening darkness creeps up, spreading  from the late afternoon and lasting longer into the next morning, time can seem to pass even quicker.

Christmas in 6 weeks and with the worrying speed of time passing we headed out to make a start on picking up some Christmas bits.

Well, what a mistake. There were people everywhere. Typical for a late November Saturday afternoon but it was stifling how busy it was. Noise. Rushing. It really wasn’t pleasant.

We didn’t last long out. I mumbled to myself that we would order online and get out of the damp drizzle and head home.

Dylan was asking for a McDonald’s and in light of the nightmare afternoon that he had tolerated so well I figured that he had earnt it. There were still queues and rows of cars trying to get into the car park. Typically, no-one indicating or in the right filter lanes for where they were trying to get to.

A car came steaming around the corner heading towards us, a seemingly disgruntled driver who had had enough of waiting in line and *had* to get parked. In his haste I moved over out if the way just as the traffic began to move, thus leaving us in the incorrect lane for Mcdonalds.

Dylan, I’m sorry, I’ve missed the turning for Mcdonalds. 

Will you have a Burger King instead?’

Now let me just explain. Theres a number of reasons why this split second change in situation could have us heading towards a small catastrophe.

Number 1: Dylan can still see McDonalds from our position on the road. He knows it’s there and he wants it. I’m now driving away from it. Thats reason number one to flip out. 

Number 2: I said he could have it. Now I’m saying he can’t. That’s not fair.

Number 3: Burger King isn’t a food place Dylan is used to. He’s not sure what he should have. Hence more anxiety.

Number 4: Dylan has various eateries on his iPad to talk about. Burger King isn’t one of them.

Number 5: In the time it’s taken for Mcdonalds to be lost and Burger King suggested we are already in the queue for BK drive-through. Dylan just hasn’t had enough time to process this change of plan.

Now we are out of the chaos of the main road I have mentally acknowledged the five trigger points and turn my attention to Dylan to explain and begin the reasoning.

But Dylan’s sitting head down engrossed in his iPad. He’s typing and glancing up and then eyes back down typing again. I take a closer look to see that he is setting himself with a new food folder. Each glance up is to check the spelling as he labels the folder ‘Burger King’. 

Luckily there is a wait at this drive-through and we are close enough to the menu for Dylan to diligently copy down his order from the display board to his iPad. 

I can’t recall when this changed happened; When the hysteria and anxiety at unplanned changes lessened and lessened until it became just an eventuality which could be acknowledged and customised. 

I can only think that it is a combination of trust, our presumption of Dylan’s ongoing progress and his ever growing self confidence. These are all combining into a beautiful pot of ability which is manifesting with Dylans confident use of his Ipad and communication programme.

I never, ever, ever thought that this situation would occur. I have been told for years that as a parent of a child with autism to expect regular meltdowns at any changes or situations that Dylan can’t control. Its part of autism. 

Well, not this time. 

Not for us.

Some days Dylan can work through the anxiety, he can reach out and communicate with us and things such as unplanned changes can be okay.

Today was one of those days

Good work Dylan.