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Up, up and away 

Grace’s 10th birthday party was this week and she opted for a climbing theme. We arranged for seven giggling 9-10 year old girls with Josh and Dylan to all have 90 minutes on a climbing wall with an instructor.

Dylan appeared keen from the get go. He quickly grabbed himself a helmet when instructed but then the whole concept got a bit real and from that point on Dylan was a bit more apprehensive. 

When Dylan starts to get anxious he will whine and winge and usually sit out. He get frustrated and bored and will then require direct attention from a parent to ensure he is kept focused and behaviours don’t spiral for him. This isn’t bad behaviour but Dylan’s anxiety coupled with frustration at himself for being unable to complete the task. To most people they see “Dylan can’t do it; he needs to sit out.”

The party leader was relatively new so she was being supported by a more experienced instructor, lets call him Bill. On the registration form it requested any medical details for the children and for Dylan I added ‘autism -non verbal’.


Bill instinctively saw Dylans anxiety but also his wish to be involved. He showed Dylan the equipment and let him hold it before asking if he would like to wear it. He spoke directly to Dylan and copied the way I gave Dylan simple language and clear choices so Dylan could repeat his option back to me.  
Dylan will link onto my arm when we’re out and gradually through the party when he was ready to try a bit more equipment or to feel the wall a bit more,  Dylan started to unlink my arm and go and link arms with Bill.

Well. He only got on the flipping wall!! And more than once!!


Bill was so supportive and reassuring for Dylan. Once off the floor Dylan would panic, it looked like his correctly fitting groin harness was sending him into sensory overload and he wanted to get down now. Dylan would grab onto Bill’s hands and hold them tight but Bill took it fine. Some people recoil when Dylan tries to touch them. I suppose being an adolescent boy Dylan has some tactile needs that are closer to a boy younger in age; like the arm linking or hand holding and not everyone understands why Dylan does this. Bill didn’t care.  
Bill was cool.

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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.

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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.

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Christmas 2016.

It’s been a wonderful day on so many levels. We have been a family. We have looked after one another, focused on one another and been there to support and enjoy one another.  A real family Christmas, it’s been great. 

But it’s also been a time for reflection. Now this is not a sad post but one to remind of how fragile we all are, how every moment should be relished and enjoyed and how we should focus on what’s really important and not get lost in the smaller issues.

I’m holding my little ones close tonight when thinking of the international terror that’s been occurring in recent months. Feeling lucky that I am born where I am rather than a war-torn climate. I’m feeling thankful that I am loved and that both myself and my loved ones are healthy.

I am thankful for my steely determined views and that I am surrounded by people who believe in me, take a chance and allow me to act on my beliefs and hopes. 

I am reminded that this time last year things were so different. For Dylan theres been so much progress made, developments, friendships blossoming. But also in wider circles unexpected deaths, changes in health and some relationships shattered. We don’t know what’s around the corner; none of us do. That’s why it’s so important to live in the moment. Take a chance, right here and now and make it matter.

Wishing everyone a merry and peaceful Christmas  xxx

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National Stress Awareness Day 2016

How can caring affect families?

When a child is diagnosed with a disability the amount of information and support offered to the family varies. Families can feel very alone and unsure about how to support their child, or what will happen in the future. Seeing challenging behaviour appear in a young child can be upsetting and confusing. There is a lot to learn and getting professional help and specialist services can be difficult.

Families are often socially isolated and can be left out of family events, activities and places in the local community because of their family member’s behaviour. Family carers say they have feelings like stress, frustration, anger, guilt, shame and loneliness, or feel that no-one understands what they are going through. Feeling low or stressed can sometimes lead to mental health problems like depression or anxiety, that need medical help. Relationships break down more often for people whose son or daughter’s behaviour challenges. Finding support and time alone to relax is really important, but can be hard. Meeting other parents is really helpful to get support and to share ideas of what has helped.

Eating well, exercising and getting enough sleep can be tough when your family member’s needs come first, especially if they have sleep problems. Families can plan their time to do activities that are good for all the family and be healthy together.

Parents might not be able to work and extra money is spent if things get broken or equipment and changes are needed at home. There are benefits, direct payments and grants that families might be entitled to.

Taken from the Challenging Behaviour Foundation Website http://www.challengingbehaviour.org.uk