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The next generation

A couple of weeks ago Grace had some friends round.

We don’t often have people over, historically it has been overwhelming for Dylan and secretly Dad and I have always felt a bit vulnerable about the sometimes innocent cruelty of kids to one another, especially to those who are different or misunderstood.

Don’t get me wrong; we have never had any issues. Josh and Graces friends have grown up with Dylan. They see him in the playground at pick up and drop off times and will often innocently ask valid questions to the younger two about Dylan. 

Children are naturally inquisitive and its important to ask about things you don’t know or understand. Ultimately its how people learn and I fully encourage this. However I am also aware of the burden to the little ones being Dylan’s advocate to the big wide world. Home should be that little bit of sanctuary where they don’t have to protect or defend him.

But the wee ones are growing up and have needs themselves too so before the half term break we agreed and had a small gaggle of Graces friends over for a picnic and a play.

Well, what a beautiful set of young souls. They played both with and around Dylan; involving him when he wished and accepting when he didn’t. Communication was no issue and his flicking, flapping and straw knawing was totally overlooked. He sat in the garden and ate with them as pleased as punch.

Faith in humanity and hope for the future restored. 

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Making a statement 

Dylan has his EHCP meeting on Friday and in preparation for this we have had to complete a form outlining Dylans wishes and plans; like it makes a blind bit of difference.

I’m struggling to hide my pessimism with the whole process but we’ve done as we’ve been told and Dylan’s SEN office had this landed in her inbox this morning.

Section A 

ALL ABOUT 

Things I’m good at (written by Mum and Dad)

Dylan is good at football and basketball. He is good a riding a bike and hanging out washing. He makes a great cup of tea and is incredibly honest.

Things I like, things I don’t like and new things I’d like to try (written by Mum and Dad)

Dylan loves food, mostly fast food such a McDonalds but he also loves a curry, pasta and any good gravy dinner with meat and two veg. He likes his food heavily seasoned with salt and pepper. He likes to drink cola and hot chocolate (but not together) He doesn’t like milk, cheese, butter or sandwiches unless it’s a marmite sandwich (with no butter).

Non-food likes – Dylan’s likes to swath himself in blankets and ensures that he has his head covered. He adores bathing and will spend many hours in bubbly baths. He likes to play games on the iPad or watch a range of kids TV shows including Roary the racing car, Paw patrol and SpongeBob square pants amongst many others. He enjoys water activities including swimming, watering plants and washing windows.

Non-food dislikes – Dylan hates the noise of handriers, motorbikes and loud unexpected noises. He is very unsure of toddlers, babies and puppies, usually because of the unpredictability and volume of their noises. Dylan isn’t keen on getting up in the morning and can take a long time to be coerced out of bed.

Dylan is keen on trying most things once it has been explained to him. He has recently been rock-climbing although he was nervous of this at first. Dylan has also recently tried yoga and this is becoming more bearable as he is getting used to what is expected of him.

Things I admire about me (Written by Mum and Dad)

Dylan knows he is fast when using his IPad as he is told this often,  

 Things other people admire about me  (Written by Mum and Dad)

Dylan listens to instructions well and tries to please people around him. He will always share with other people.

What’s working well, what’s not working so well and what I’d like to change



Dylan works hard at learning; he has less anxiety since leaving school. Dylan is attending more social groups which exacerbates his anxiety although this is improving with increased exposure. Dylan’s communication is improving hugely with the iPad and he likes that fact that he can increase his vocabulary independently with it. Dylan uses the IPad to communicate with a wider range of people which makes him happy.

Dylan doesn’t have enough exposure to mainstream peers of a similar age that can model appropriate behaviours for him and allow him to develop friendships.

Dylan isn’t given enough time to respond to people using his iPad; it requires a lot of education for the wider world to know how to communicate with Dylan’s iPad.

How I need to be supported to be heard and understood 
Dylan needs access to his IPad, fully charged at all times to be able to communicate his needs. Dylan requires 1:1 support at all times by an adult who is familiar with Dylan and his needs to ensure his safety with roads and strangers and to facilitate communication with others. When Dylan’s needs are not understood he can self-harm and internalise his frustrations, the trigger points of which can also be overlooked by those unfamiliar with Dylan and his needs.

The important people in my life; family, friends, favourite people (even pets)  

Name: Relationship:

Daddy Dad

Mum Mum

Josh Brother

Grace Sister

Hal Dog

Dylan’s story so far 

(Provided by Mum and Dad)



Dylan was born in 2003, a happy and healthy baby, did not develop speech and so was referred to SLT and had a diagnosis of autism by age 3. He attended an enrichment nursery place before moving on to MLD school age 4. Progress was non-existent and Dylan was bullied and frightened by the unpredictability and aggression of the other children in the school. Despite voicing concerns to the school about lack of progress and Dylan’s deteriorating mental health we eventually had no option but to remove Dylan from his school placement and to educate him at home.

Five years on Dylan has progressed although not enough to catch up with his peers but he is no longer is as anxious as he was previously. He enjoys his academic lessons and is progressing well at developing life skills.

Dylan’s aspirations and wishes e.g. education, play, health, friendship, further education, independent living, higher education, employment, family, next important steps

Dylan is very motivated by money and has expressed an interest in being employed when he is an adult. He would like to have friends and be able to play outside with his brother and sister.

Dylan’s family’s story

Dylan was our first child and was quickly followed by his younger brother and sister before he was diagnosed with autism age 3. Dylan’s education has been unsatisfactory with only the bare minimum being provided. The formal schooling system has felt to us as parents as glorified babysitting rather than him gaining any sort of education. We felt trapped and distressed by the lack of support with regards to Dylan’s inability to cope with the school place he was in and it was only as an absolute final straw that we took the plunge to remove him to try and make things better for him ourselves. Since then we have not had support or help from the local authority to educate Dylan despite repeated requests. Thankfully, due to our dedication and love for Dylan we have nurtured him back to being happy and responsive to learning. This has taken years to build and required a parent at home with Dylan full time which has had a knock on effect for the whole family financially. Dylan’s brother and sister Josh and Grace love Dylan very much, as he does them. 

Family’s aspirations and wishes for Dylan e.g. education, play, health, friendship, further education, independent living, higher education, employment, family, next important steps

We would like Dylan to develop a circle of friends and acquaintances. We would like him to be able to work in some capacity and earn his own money. We would like Dylan to be as independent as possible to manage his own health and to be able to keep himself as safe as possible. We will always have a place here with us if Dylan wishes to live with us forever. We want Dylan to be happy.

Summary of aspirations and wishes for Dylan (Long term hopes and dreams of the family or young person)


To be happy


 We’ll be seeing them Friday….
Photo courtesy of ‘A Very Special Needs Resource’  https://www.facebook.com/AVerySpecialNeedsResource/

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April is Autism Awareness Month: Day 2 – Peace, Love and Understanding 

**April 2nd is World Autism Awareness Day -. For anyone who doesn’t have their head in the clouds and is already AWARE of autism let’s spread that gesture to ACCEPTANCE and UNDERSTANDING.I can’t speak for all people with autism just because I know one and I’m not going to claim to be able to. Just like I can’t speak for all women or parents just because I am one.

But I *do* know Dylan and if I can increase the worlds understanding of Dylan and his autism using everyday examples then hopefully we can all create a society that has insight and understanding for him and others like him.

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The increasing incidences of people being diagnosed with autism means that we all potentially could be coming into contact with those affected by this hidden disability many times a day. 
Imagine waking up one morning and you’re in a foreign country, no one speaks your language clearly and certainly no one understands yours or what you’re trying to say. 

What would you do?? 

Where do you go for help? 

Who do you turn to for understanding?
Dylan wakes up every morning facing these challenges. Please be the one who asks him and others like him, ‘How can I help?’ ‘What do you need?’ 

Don’t pretend not to see him or his despair but offer him comfort and understanding. 

For this is how he will learn to find peace with the foreign surroundings that he faces each and every day and will continue to do so for the rest of his life.

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Retail therapy 

Wowsers this week’s been a whopper. 

We as a family had some good news last week that there may be some progress with finding a bigger home for us. 

“That’s great” we thought 

“Maybe, just maybe, we could move by Christmas time!?”

 Fast forward only two days (thats right two days!!) and we’re standing outside a beautiful 4 bed house with the papers signed and the keys in our hands!!

Yes it’s been positive, yes it’s been quick and yes Dylan doesn’t know what’s going on! With very little time: we need to have completed the move by early March- and absolutely no preparation for moving made, a lot of the physical graft and preparation has fallen on Dad. Fine usually but when you’re home educating that means Dylan too!

So after a few days of hanging around hardware stores and sitting in a cold dirty house for hours we took Dylan out for a bit of Dylan time.

Hoovers. It’s not the sucking motion,  it’s not the appearance and it’s certainly not the noise they make but Dylan loves a good Hoover. Its the manufacturing stickers on the back that Dylan is interested in. He moves each appliance so he can see the sticker on the back. I followed him around for about 15 minutes doing this. Afterwards much calmer. Oh and hungry, we skipped dinner; off to McDonalds we went 🙂

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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.