The Unravelling!

Those of you with children on the Autistic Spectrum are all well aware of the concept of unravelling I am sure, but I wanted to tell you a little my daughter Lily who is 5, going on 15 (and soon to be 6)!

Lily was born, unassisted, in Peru in 2008, in a room overlooking the sea, in a tiny village called Los Organos. She was born in the early hours of Christmas Eve and therefore earned the affectionate nickname of Angel De Navidad...Christmas Angel.

It was a very fast, easy labour and delivery and because of the time difference, we were able to Skype with our family in England shortly after she was born so everyone could see her.

She was a lovely baby. Smiley, affectionate, easily humoured and friendly. She met all the milestones with ease, fed well and developed with no obvious 'disabilities'.

We lived in Peru until Lily was 15 months old when a family breakdown forced us to return to Bedford.

Upon our return we were homeless and income-less so we stayed with my mum. She lives in a three bedroom semi so the little ones and I shared a room! Dominik had his own, my mum had her own too and I shared with Lily and Hannon.

It was around January 2010 that I began to investigate Dominik's quirks and discovered that he had a myriad of differences.

I suppose being alerted to all the different neurological conditions opened my eyes to all the possibilities and I began seeing Lily in a different light.

She wasn't happy being dressed. She did not sleep well. She wasn't happy with any kind of change. She became fussy and obsessive. She was resistant to new people and places and she adored her nanny!

I suspected she had an Autistic Spectrum Disorder with the often found sensory integration diffculties to boot very similar to her oldest brother.

Fortunately, our life was structured in such a way that I was able to accommodate her differences with ease most of the time. The decision to home school was a blessing in disguise! It enabled us to find our own rhythm and it helped me to understand Lily (and Dominik and Hannon) better than I would have been able to had they been away from me for hours every day.

Lily's difficulties continued to expand. She was edgy, nervous, aggressive and took to running away whenever she was upset/angry/overwhelmed or unable to communicate properly.

Between the ages of 3 and 5 she was at her most challenging. We could not go shopping, to busy parks nor noisy play centres and we could not travel any distance in a car at all.

She would take hours over a meal, procrastinate about clothes and shoe choices and point blank refuse to do anything that was outside of her comfort zone.

Life was becoming more and more isolated with two little ones on the spectrum.

When Dominik was 9 and Lily was 5, I applied for Disability Living Allowance. I was successful for Dominik in the first instance but it took two tries to get Lily an award.

The first thing I did was find a local homoeopath with knowledge of Autism. I contacted Alison Jones who agreed to meet us all and see what she could offer.

Alison was a godsend. Her patience, tenacity and understanding made a refreshing change after the professionals I had met up until that time.

She put Dominik on a series of remedies and the difference was almost immediate.

I decided to ask Alison to treat Lily and Hannon too.

Lily began seeing Alison in early 2014. She was given several remedies to tackle her challenging behaviour from several angles. We dealt with language, maturity and tried to increase her sense of calm.

Lily has been a completely different child during this time. So different in fact, that I began to question whether or not I had imagined all the difficulties she was experiencing.

Things have now changed!

For those of you who do not know anything about homoeopathy, there are a couple of stages that the remedies go through. There is a 'proving' stage where you expect to see an escalation of the symptoms for a short time (this means they are having an effect) and then there is a settling period where the remedies 'find their mark' so to speak and the behaviours are diminished, or in Lily's case, eliminated completely.

Lily has been stable since early summer. Her remedies has varied slightly but have not 'tailed off' to any extent. She has matured, her language has flourished, she has not had any violent episodes nor has she had trouble sleeping. We have had a real life!

At the end of last week that all changed! The remedies seem to have finally run their course and the difference has indeed led to an unravelling the likes of which I have never seen before.

She is anxious, easily upset, extremely emotional and fragile. She is punching, kicking, running away, hiding, screaming and reverting to the behaviours of a toddler to make her point. She also seems to have forgotten how to use any words at all at times of high anxiety. It has been an eye-opening and depressing few days.

These kiddos have a tendency to lull us into a false sense of security I think. Many weeks can pass without incident and then, out of nowhere it seems, everything regresses. Sigh. It is so disheartening and so very distressing to watch it happen. To see Lily so traumatised by her own mood changes has been horrible. She is at an age now where she is very self-aware. She knows that she is behaving differently and this alone frightens her compounding the problems further.

Lily was given an emergency remedy this morning and has had a semi-aggressive reaction which was thankfully, short-lived!

I hope we are now back on track but only time will tell.

There are a couple of good things to come out of this experience and they are:
Firstly, I wasn't imagining her 'disability' in the first place. And secondly, the homoeopathy is having a huge impact on her behaviours in a positive direction.

If you have any questions, please do contact me. I would love to share our experience some more.

Here's wishing for a quiet day for us all!

N

The right to be disappointed in someone else.

Who do people think they are?

To look at someone else's actions/words/life and to pass judgement is wrong I think.

"Judge not lest ye be judged." - Matthew 7:1-3

Is that the essence of why we judge one another? Because then everyone can be judged indiscriminately? That can't be right.

I have an intense dislike of people passing any kind of  judgement.

I am not completely free of the urge yet but I am consciously working on it.

I will do my utmost to see the best in every situation/person I encounter because I would rather be happy than sad.

I would rather other people were happy (and loved as I am) than unhappy and I would not deliberately hurt anyone and I think passing judgement is hurtful. (That stands irrespective of what they may have 'done' to me).

No one does anything to you beyond that of their actual 'behaviour'. There lies the end of their power. It is how you respond to that behaviour that ultimately matters. That is where the true power of people lies.

"It ain’t what they call you, it’s what you answer to." - W. C. Fields

I don't think I have always been this way, but it has always been the way I was heading.

Perhaps this is the biggest lesson to pass on to my children?

Be accepting of others. Be tolerant. Be understanding. Send out love, empathy and kindness.

The world needs more of those.

N

Dominik uploaded the Introduction to his new YouTube Channel!

Proud Mummy moment.

My 10 year old uploaded his first YouTube video this week after much learning and much angst!

I am flamingcomet.

He also has a Facebook Page and a Twitter all set up ready to go. :-)

Here's wishing you much success in your chosen endeavour Dominik. Let the gaming career commence!

Mum x

Teaching by Stealth - My top Tips!

Teaching by stealth is something many of you have heard me refer to before I am sure but it is something that has been invaluable to me so I thought I would expand on the idea a little more and turn it into information that would make sense to everyone!

A brief description -

Teaching by stealth is imparting information, encouraging learning and curiosity, and presenting interesting new opportunities to children, that are cleverly disguised as fun activities (which are actually fun).

For me there is an added layer to teaching by stealth because my son is demand avoidant and will generally refuse to do anything if it was a) not his idea and b) if it does not coincide with his current interests.

So, here you go, my top tips, for teaching by stealth.

Focus on what they love and expand on it!

• create a simple word search of characters names
• have a drawing competition
• send the characters to the shops with some money and list of items to buy
• make your own jigsaw puzzle
• play with your children and let them teach you what they know
• help them research the history/development of their chosen interest
• find someone who is more knowledgeable than you are and make a connection with them on behalf of your child
• use paper mache to create something from a show/game
• encourage them to use pixel art/Minecraft to create their own scenes and stories
• make your own board game
• use instruments to create a unique soundtrack and storyline
• make masks and costumes and play-act together
• make your own finger puppets and put on a show
• use their current interest as a theme for charades
• play hangman using their theme
• send their favourite character on a round the world trip and plan their journey
• use the internet and find out as much as you can and drop tid-bits of new information into conversation
• write a quiz and have a prize for a certain number of correct answers

I hope they give you some new ideas to get more out of the time you spend with your children and to help them get more out of what they love.

N x

PS - I just came across a great list of recommended reading for those interested in learning more about relaxed home schooling.

Some of our favourite resources!

It occurred to me that this might be useful.

This is a list of things that we do together more than twice per week.

1. Snap
2. Top Trumps
3. Mario Kart Wii
4. DJ Hero
5. Angry Birds
6. Scrabble
7. Game of Life
8. Monopoly Junior
9. A Harry Potter Diagon Alley game.
10. Battleships
11. Mastermind (with the coloured pins)
12. Pokemon
13. Trampoline
14. Cards
15. Draughts
16. Hangman
17. Eye Spy
18. A few games Hannon knows from Beavers.
19. Jenga
20. Pictionary
21. Charades
22. Matching Pairs
23. Freecell
24. Spot the Difference
25. Jigsaws
26. Cooking
27. The Park
28. Crafting
29. Face painting
30. Hama Beads

And the list goes on (I realise) so I'm going to stop there!

This list comprises of games that are played by many different combinations of my household, and friends, for varying lengths of time.

It looks like a lot.
But it isn't.

We have lots of fun learning and growing together.

N x

All because of a Galaxy bar!

I read many stories from other parents (mostly mums) about the abuse they suffer at the hands of their highly resistant Pathologically Demand Avoidant children and to be completely truthful, I tend to sigh and move on quickly as they upset me.

I did think though that it might be useful to describe what happens in my house when Dominik, my PDA eldest son, has a bee in his bonnet about something.

At this current point in time, Dominik's 'bees' tend to be about food or money.

Dominik was once a slim, energetic, active child who pretty much ate what he wanted and didn't gain weight. Well that is not the case anymore. Over the past 18 months, he has slowly become more sedentary and more fixated on unhealthy foods.

I am a conscious shopper. I don't buy snacks as a rule, we don't have chocolate in the house nor do we have jelly sweets, ice cream or fizzy drinks. I buy organic, whole foods and I cook all of our meals form scratch. I get my Abel and Cole box every week and we drink fresh juices and enjoy home made soups on a weekly basis. I also have never had a microwave.

My children's health and well-being is something I take seriously and it is one of my top priorities. I spend plenty of time telling Dominik about essential nutrients and vitamins and we even went so far as to give the main vitamins personalities and characteristics so my children would remember why they were so important!

Well, this is all well and good, but with a PDA child, once the genie is out of the lamp, it is impossible to put it back.

We had a very close friend and neighbour who would regularly turn up at our house with the giant, £1 Galaxy bars and share them with my three. This honestly was not a problem because whilst I may buy very little of the sugar laden foods, I have no problem with others buying it for them. In fact, my mum relishes this part of being a nan!

Yesterday, Dominik decided he wanted a £1 Galaxy bar as he hadn't had one in a very long time. This is true, it has been months since we've indulged in a giant Galaxy, but I still not want him to have one as he had certainly had enough calories for the day already.

I took a stand and said that I would not go to the shop and buy one.

That's when it began. The screaming, the crying, the throwing toys around the room, the ripping my duvet cover off my bed, the hiding under the bed, the swearing, the punching, the 'you hate me', 'you're the worst mum in the world', refusing to have the shower that had already been put off since Thursday....and the list goes on.

Yes, this is hurtful, difficult for my smaller children to witness and downright exhausting (especially after an hour and a half) but I stuck to my guns.

What I often read in these scenarios is that other parents escalate the situation...adding on punishments and retributions for the current round of disruptive (panic/anxiety driven) behaviour whilst it is occurring. I do not do this.

I sit quietly, I maintain eye contact, I speak in a soft voice, I empathise, I reiterate my point and I finally say that I am done talking about the Galaxy bar today.

This is not always guaranteed to work. As I said, this particular event happened over an hour and half at top volume. In the end he went and curled up under my daughters bed. My son went to see if he was ok. He was ignored. My daughter went to see if he was ok. She was ignored. I sent him a text message (which is sometimes the best way to communicate to him that yes, I do care, but no, I will not talk about the issue any more) and I was ignored too.

He eventually came out and instantly complained that none of us cared about him. I pointed out that we had all tried to make him feel better....which he did not acknowledge as being true, but he did drop the subject.

In the end, the meltdown was over and we all got on with our evening. I needed to nip out to the shop and while I was there, I bought him a small Twix.

I took it home and gave it to him. He was over the moon. Full of gratitude and love because even though it wasn't what he had asked for, it was an acknowledgement of his current needs (and in my mind, a reward for moving on relatively quickly from a meltdown). He gave me half of one half. Proud mummy moment which also demonstrates that it is less about the chocolate, and more about the control.

No, it wasn't what he had demanded. Yes, it was small. But, most importantly I think, it left him feeling like he had not lost face. That he was still loved. And that yes, I did indeed care.

I'm sure there are plenty of people who will see this as rewarding 'bad behaviour' but I don't. For me, it was a way to connect with him, even when he is in the dark. He knows that his behaviour is unacceptable (after the event) and he knows that it won't help him achieve his goals (after the event). But he also knows, that I love him, and that if something is reasonable, and not extravagantly over-indulgent, he is likely to get it.

I try not to sweat the small stuff. For us, meltdowns, can become small stuff if they are handled with sensitivity and empathy.

N x

Dominik in Portugal with his precious 7Up! 

What does unschooling a PDA child look like?

We (my household) have honestly, cross my heart found, that the fewer the demands (ie, respectful living, few rules, free rein to roam in the early days), the higher the level of cooperation we can expect in the future.

Dominik was at a point where we could not leave the house as a family at all. My mother would not take them anywhere nor would she babysit at night for me. He ran away at times too.

Things were almost unbearable....so I let go. I paused for breath, I stopped trying to control his behaviour and I let him be himself. I ignored the bad behaviour. I learnt about his hobbies and interests and tried my best to share in them with him.

It was an intensive, one-to-one trust building exercise.

Yes, he does choose many activities I don't like! But guess what, I have hobbies he doesn't like too!

The more he trusts me not to judge and control, the more he wants to trust me and listen to my thoughts and opinions.

He is no longer instantly offended by my disagreeing with him nor by my saying no.

He is beginning to understand that not everyone is out to get him.

He said to me a few days ago, "Mum, don't make me think about things because when I do they frighten me". He meant it.

Imagine living in a world where as soon as you thought about an action (and presumably its potential consequences) you became frozen? So terrified that you either engaged; fight, flight or freeze.

That's what is happening to our children.

We need to build their trust and their own self-esteem.

N x

Home Educating in Bedford Borough - Our Story

Some of you may not be familiar with home education guidelines in England so I thought a document that outlined the legal position and the powers delegated to local authorities might be useful.

But, rather than reinvent the wheel I am going to link to some pages that provide an excellent summary of the law for all children and also more specifically, those within special needs settings and then I am going to tell you about our experiences.

edyourself.org - Fiona Nicholson

Education Otherwise

HE and SEN

HE and SEN - from Fiona Nicholson


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Now, about our HE journey.

In England, home education registration is voluntary. Well, in theory!

I did not intend to register my home education plans with Bedford Borough (as is my right) but that intention was superseded by a paediatrician who took it upon herself to report me to the local authority pretty much as soon as we left her office (whilst at the same time refusing my requests for an auditory processing assessment, an educational psychology assessment and an occupational therapy assessment).

I had a phone call from Lindsay, the Elective Home Education Officer, within an hour of arriving home. Sigh.

The argument the paediatrician made was that Dominik was a child missing education.

Dominik was clearly not a child missing education. He had demonstrated an incredible amount of intelligence/knowledge during his appointment, discussing his science experiments and his desire to be a little 'Einstein or Tesla' when he grew up.

When I pursued a formal complaint against the paediatrician I was told that safeguarding legislation gave her the power to share my information because Dominik was a 'child missing education' and that this was permissible within the safeguarding guidelines. I went on to learn that home education is never (in and of itself) a self guarding issue which meant that her referral was completely unjustified and way outside the scope of her 'powers'. 

However, this small detail of legality does not seem to matter to some of those in positions perceived authority.

At this point I decided to challenge the EHE Officer instead and I did make her life rather difficult. I asked to see her CRB clearance (as it was then, now DBS), I asked for her personal work experience with special needs children, I asked her if she would make a video of herself so that I could introduce her to Dominik without the need to meet in person first, I made it clear that she would not be able to visit us at home and I also stated that I understood the law and that I would not be bullied into complying with anything outside of it. Needless to say, she accepted my final offer of submitting a written summary of our learning journey on a yearly basis without the need to meet any of us. That is the maximum legal requirement for home educators at this time.

Suffice it to say, at the time, I was furious. I really did not want to have to report on my home education to anybody! Especially knowing that Dominik (who was the only one of statutory school age at that time), was never going to comply with a more school-based, traditional approach to home education. I was worried that an autonomous education would be hard to justify and document. I was terrified that I was going to fall prey to more overly judgemental busy-bodies who thought they knew best and assumed a lack of formal, written work meant a lack of learning.

Well, thankfully, I was wrong! Phew!

Lindsay has been nothing but supportive and non-judgemental and has (I think) thoroughly enjoyed reading about our exploits!

I am now going to give you a few samples from my reports for 2014. I should probably add, that I do submit more than is necessary but I like to have a record of what we have all done for myself (and for the kids should they ever ask)! My reports also include, photo's, videos and a list of resources.

If you would like to read more, please send me an email and I will send you a full copy.

Art & Design

"Dominik continues to explore his creative side in the kitchen with more baking and juicing. His favourite YouTube channels include ‘Nerdy Nummies’ and ‘CupQuake’ both of whom make gaming cakes and gifts. We have replicated several from Minecraft and Pokemon. We recently baked some cookies in the shapes of ‘Soul Eater’ characters, one of Dominik’s favourite animes.

We have been making lots of pixel art with hama beads which have not only expanded his creativity and design skills, but have helped enormously with his fine motor skills and concentration. He is also still making plenty of pixel art in Minecraft."

Trips & Activities

"Homoeopath

Standalone Farm

Wagamama

Scratby

Hitchin Pool

Milton Maize Maze

Fancy Dress Party

EuroGamer Expo

Nature Kids (Felicity Evans)"

Geography & History

"This year has seen Dominik expand his viewing to Animal Planet, The History Channel, MythBusters and several YouTube channels, including ‘VSauce’.

His geography is improving due to his love of Minecraft! We founded an Unschoolers Internet Gaming Group and were joined by families by from all over the world. He now plays regularly with friends from Australia, Malaysia, Canada, Japan, Wales and the United states to name but a few."

Maths & Science

"Notable experiments:

Fire (exploring oxygen, tinder, burning times, fuel)

Lots of combustion with bicarbonate of soda.

Electronics

Cranes

Sea Monkeys

Ant Farms

Friction

Flight

Juicing

Dehydrating

We have spent time watching the Slooh web cam and have seen many an asteroid flyby. We watch videos from the International Space Station also.

We watch a lot of MythBusters and Ancient Aliens."

English

"He has played Scribblenauts on the PC and we still play hangman and Scrabble and various word games on the tablet and online regularly.

He has begun reading the Manga comic Soul Eater and we have started to read The Hobbit.

We play a game called MadLibs which is an excellent way of learning basic English Language skills."

Music

"Dominik is constantly utilising music in his environment. It seems to ‘power’ and exemplify his mood. This year he has explored heavy metal, Japanese traditional music and Band Hero on the PS3."

Physical Education

"Dominik has taught himself to swim this year and we had an amazing day out at Hitchin Pool. We also went to Scratby for a short family holiday which further helped his learning. He was able to cope with the noise, smells and unpredictability of the environment better than ever before with only one major meltdown during our stay.

He still loves to bike ride and often rides to his Nan’s alone for a visit. He recently went to her house to deliver flowers and card for her birthday. My mum was so proud and she said it made her birthday very special to see how far he has come and what a lovely young man he is becoming."

ICT

"Dominik is still an avid ‘gamer’ and has this year extended his gameplay to more ‘retro’ games. These are often more challenging. They are also an expansion of his curiosity as to where games have come from and where they are going.

We went to EuroGamer this year where we spent a considerable amount of time in the retro games arcade where Dominik was able to ask questions of the stall holders and experience how gaming happened in the early 1980’s. It was a great learning experience on all levels."

Please do remember we are completely unstructured and autonomous and yet the learning flows easily (even with a PDA child).

Finally, I would like to emphasise the importance of being pro-active with the LA if you should choose to register (or you deregister). We were recently invited to be part of a working group here in Bedford Borough to redraft our home education guidelines and policies and bring them into line with the government guidelines and other examples of best practice.

It was productive and useful for all concerned and I sincerely hope that all those considering HE in Bedford will receive a warm welcome and lots of support and encouragement.

Thanks for reading! I do hope this was useful.

N x

Thinking about Senses.

Tonight, (Monday 6th October 2014)I was lucky enough to attend an excellent presentation about the sensory issues often faced by children on the Autistic Spectrum. It was delivered by Jo Dorasamy (whose blog can be found here: Family Life with ASD ) from The Avenue (whose website can be found here:The Avenue ). A massive congratulations to Jo for doing a great job.

I think that what I enjoyed most about the evening, was the feeling of recognition I experienced when meeting other parents who live within special needs families. (Non-muggles as my very dear friend Emma D would say). Us ‘non-muggle’ parents seem to share a sense of community that goes beyond words and joins us together at a more intuitive, compassionate level.

Just the thought that there other families out there whose houses are strewn with sensory toys, tools and activities is so comforting! I often try to imagine what the insides of other people’s houses must look like when they have children whose needs are not dissimilar to those of my own children. Well, now I know! Pretty much the same if the ‘props’ supplied by Jo and Sarah for the exhibition are anything to go by!

So, just to mention as few of the things that really stood out for me.

The sitting aids – see-saw chairs, fidget pads, weighted blankets, slanted lap tables and the spectacular spinning egg chair.But think about it, if a child needs this much assistance to simply be comfortable, how on Earth can we ever be anything other than in total awe at what they achieve? The things we take for granted as people with neurotypical senses (well, almost in my case) is astounding to me. Imagine if you could not regulate your spatial awareness? Imagine if simply not being able to sit in a chair ruined your ability to concentrate? The amount we ask from these children is massive and they all deserve a pat on the back for not going stark raving loopy more often!

The hearing aids and the visual aids for hyper sensitivities – ear defenders, sunglasses, hats, hoodies, lava lamps, kaleidoscopes and flashing, hand-held lights. Just brilliant! I know from experience that when the world is too loud and too bright and too fast-moving, the little people fall apart extremely quickly. The sensory overload is so massive that their brains simply cannot filter out the ‘small stuff’ as neurotypical brains can. The stress on the child (in all ways - emotional, sensory, psychological, mental) is overwhelming and more often than not a meltdown will follow this sensory overload. Knowing how to lessen the ‘small stuff’ is the key. Paying attention to how your child reacts to these issues will 100% guarantee a happier child and subsequently, a happier family life.

The importance of having a full sensory assessment by a trained Occupational Therapist was also a key theme to the evening. Like Jo, I too paid for a private, comprehensive assessment for Dominik (who has pretty much all of the sensory difficulties you could describe) and it was worth its weight in gold. Being able to understand why he was so very clumsy and why he did not get dizzy not matter how long he span around for and being able to finally understand why he could not tolerate a noisy shopping centre or swimming pool turned our lives around. I cannot recommend an assessment highly enough. Life will improve exponentially once the sensory issues are unravelled.

For us, having the OT assessment, (and now having a firm understanding of Sensory Processing Disorder), meant that my daughter, who is now 5, experienced a kinder, more understanding and far less demanding mother with much more realistic expectations of what she would be able to tolerate than Dominik ever did. Unlike her older brother, who was literally dragged kicking and screaming sometimes around a busy town centre or into a supermarket, she has never had to experience any of that. I saw the signs in her behaviour as soon as I understood what I was looking at. I was able to guide and explain to her what steps we could take to make things easier before we even attempted an outing somewhere that would be challenging. I had a hat. I had sunglasses. I had lots of juice and snacks. I was prepared for the fact that I may need to carry her so I never planned to buy much on any given trip! Her life was better because of my new found knowledge.

It is easy with hindsight, of course it is, but, once you have the knowledge you must use it and you must not beat yourself up because you didn't know about it before. I am a firm believer in the philosophy that everything happens at the right time and that life unfurls as it is meant to (even if does not feel that way). I apply that philosophy here too. I can wish I had known earlier what made Dominik so very hard to manage, but I didn't. Meh. There is nothing I can do about it now.

Except to say, that now I can rest easy  because once I knew better, I did better. And so will you. J

I am certain that Jo, with her personal, touching and informative presentation tonight has helped many, many families to finally understand some of what is going with those they love and wish they could help so much. This month, Sensory Awareness Month, at The Avenue in Biggleswade, will change people’s lives for the better.

Kudos to you all (as Dominik would say)!

N x

Pathological Demand Avoidance Syndrome - A little known part of the Autistic Spectrum that leaves a big impression.

Let's begin with a summary form the National Autistic Society website, which can be found by clicking the link below.

http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

“People with pathological demand avoidance syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.

PDA is increasingly recognised as part of the autism spectrum. Here, we explain the characteristics of PDA and what can be done to support someone who has the condition.

What is PDA?
PDA, first described by Elizabeth Newson during the 1980s as a pervasive developmental disorder distinct from autism, is increasingly becoming recognised as part of the autism spectrum. It is a lifelong disability and, as with autism and Asperger syndrome, people with PDA will require different amounts of support depending on how their condition affects them.

The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. Hence the name of the syndrome: pathological demand avoidance.

People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, usually because they need to control the interaction. They often have highly developed social mimicry and role play, sometimes becoming different characters or personas.

The main features of PDA are:

• obsessively resisting ordinary demands

• appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)

• excessive mood swings, often switching suddenly

• comfortable (sometimes to an extreme extent) in role play and pretending

• language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'

• obsessive behaviour, often focused on people rather than things.

 Often in cases of PDA there will have been a passive early history, but this is not always the case. It is believed that there may be neurological involvement in some cases, with a higher than usual incidence of clumsiness and other soft neurological signs.

The main features of PDA are described in more detail below. Other children on the autism spectrum can display one or more of these features but when many occur together it is helpful to use the diagnosis of PDA because things that help people with autism or Asperger syndrome do not always help those with PDA.

People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a 'Jekyll and Hyde'. It is important to recognise that these children have a hidden disability and often appear 'normal' to others. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.

People with PDA are likely to need a lot of support into their adult life. Limited evidence so far suggests that the earlier the diagnosis and the better support that they have, the more able and independent they are likely to become.”

So, there you go. A simple explanation that goes part way to describing life with PDAs.

A little history and how I came to learn that my son, Dominik, was not quite what I thought!

Dominik was born with no complications after a simple natural birth. He was highly alert. Incredibly demanding and met all of his milestones very early. He came out raring to grow up!

We moved to La Gomera when he was 3 months old after travelling around Europe by car for 7 weeks. 

As the months passed and we got to know others with small children around Dominik's age we began noticing difference. He was louder, he was more persistent, he was more capable, he was fussier, he was more intense across the board.

By the time he was a year old, he was walking, he had 16 teeth and his feet were the size of a 3 year olds'!

He would not be dissuaded from anything he was engaged in. He tried to make friends but went about it the wrong way, he seemed to see no difference between children and adults, male and female and would not be bribed nor cajoled by promises of ice-cream or fizzy drinks. If he wanted to do something, he did it, 

He was a born escapologist. The number of times he escaped from his pushchair, broke out of his cot, tried to log into the computer, stole food from the cupboards, trashed his room and escaped from our house I cannot count. 

He was certainly different! It was obvious that he was of above average intelligence and had a fair degree of hyper-activity but aside from that, he was excellent fun and always kept me on my toes.

Needless to say, he followed none of the rules! I read as many parenting books as I could digest (in between chasing him around and meeting his needs) and yet none of them seemed to work! He was expelled from his first class at the age of 3 and a half after less than an hour. He simply did not understand that there were rules that he had to abide by! Whilst all the other children did as they were told, Dominik charged around the room, investigating every corner and asking a constant stream of questions.

Now, I suppose, had we been in England, we would have sought some kind of professional advice but being abroad, on a tiny little island, that was not a possibility, so we just ploughed on.

As a result of lots of twists of fate we returned to England in 2010 when Dominik was almost 6 years old.

A chance conversation with a friend brought Asperger's Syndrome to my attention at the same time as I decided to take him to an Educational Psychologist.

The private Educational Psychologist measured his IQ as being roughly 130+ (he refused to complete all the tests, no surprise there) and the NHS paediatrician diagnosed ADHD with traits of Asperger's. So, right from the get go, he did not fit neatly into the ASD profile.

He was far too social, far to good at making eye-contact and far too good at imaginative play to fit neatly into the Autism box.

As time passed and I began to train myself in the strategies and parenting techniques recommended by the professionals to manage Autistic behaviour, his confidence, pliability, and willingness to participate in everyday life decreased. He became stressed by the timers I bought, refused to stick his stickers on the Power Rangers reward chart I made for him, and fought every instruction tooth and nail.

I should mention at this point, that it was never my intention to send my children to school. Before I had any children I had made up my mind that they would be home educated (although, not in the way we currently do) so school had never figured in my thinking. And thank goodness! Dominik could read fluently and independently by the age of 3. He had memorised all the Thomas characters by the age of 2 and  his ability to learn new skills was unparalleled. School would simply have compounded many of our problems. For example, Dominik would not be rushed...ever! I cannot imagine the battles we would have had simply trying to get him dressed (which he still hates to this day), trying to get shoes on, trying to get him to transition from one activity to another. And the list goes on as I am sure many of you know.

So, how did I come to discover PDAs? Well, I joined a Facebook group of home educating, single mums and one of them, whose name was Laura, happened to mention to me that she had met an amazing former Headteacher who had assessed her son and determined that he had this little known condition called PDAs, which was a part of the Autistic Spectrum of disorders. Aha, I thought, maybe she would be interested in meeting Dominik.

We consequently met with Felicity (Evans, www.naturekids.co.uk) and she observed Dominik over the course of an afternoon out at a farm and then again at her home, which is where she runs her small, private school.

Felicity was able to give me new language and strategies which turned our lives toward a positive direction for the first time since I had begun seeking answers,

I no longer tried to use bribery, coercion and punishment and I no longer used timers and reward charts. I began taking some of my more subtle tactics to a whole new level! Now life was about negotiation, compromise and acceptance.

I accepted that Dominik was never going to be someone different. He was himself to the nth degree at all times. He did not care about being socially acceptable, he did not care about making friends (although, he does now), he did not care that he was 'just a child' and most importantly, he was never going to accept being treated in any way that was less than equal to an adult. 

I think that the last point is perhaps the most difficult to understand. Dominik does not see division. He does not see differences. He treats everybody the same and does not tolerate double standards. If I say, "I'll be there in a minute." then so can he, If I can decide that I want a snack instead of dinner, then so can he. If I can choose when I go to bed, then so can he. Etc etc.

To observers, I am sure he appears crass, loud-mouthed, oafish, hyperactive, unkempt and out of control but to me he is simply Dominik. My amazingly tenacious, determined, hard-working, accepting, loving, dedicated and enthusiastic son who will never accept any less than he thinks he deserves.

Below is a link to the PDA Resource website and the PDA Society website. I cannot recommend them highly enough if you would like to learn more.



PDA Society

A must read page on Jane Sherwin's blog called - Strategies that work for Mollie.

And here are the results of the PDA questionnaire, produced by Liz O'nions, which I, and many of my friends completed.

Paper on the new PDA questionnaire (the EDA-Q) by Liz O'Nions and others

I hope this has given you some new perspectives. I hope that perhaps it has even given you some clues if your child doesn't quite 'fit the profile' but most of all, I hope that this post has given you some hope. :-)

And please, do contact me if you would like to know more.

N x

Thinking about respect.

Last night I was kept awake by a series of persistent thoughts focussing on the concept of respect.

The thoughts consisted mostly of questions and I thought I'd share them here, if only to stop them nagging me!

We constantly ask for respect from those around us, but how well do we demonstrate the concept?
Is it something that is easier said than done?
What are the consequences of a lack of respect?
What other virtues arise as a consequence of respect?
Is it the cornerstone of good relationships?
Is self-respect a consequence of living surrounded by respect?

As an unschooling/life learning household respect is something we talk about a lot. Our lives are so intimately linked that often times respect becomes the lynch pin of our day to day life. Afterall, how else would we ever get anything done!?

For example, I need to run some errands and my youngest children (7 and 5 years old) are too young to stay home alone so I tell them what I need to do and explain that they need to come along. They are both busy (one playing Ratchet and Clank and one watching My Little Pony) so we talk about how long they both need to finish what they are doing and agree when we will be ready to leave. When the time comes, we leave without a fuss. Phew.

I think that this approach is particularly helpful with Aspie children and especially for those with PDAs (I am going to write about PDAs in more detail in the coming days) because it allows them to have both have some control over their time and it give them time to prepare themselves for the upcoming transition (which we all know is very hard). There are no surprises (or at least very few) and when there are, the children are better able to manage them as they know that it really is unavoidable.

I think the anxieties associated with Autistic Spectrum Disorders are lessened if the person feels in control. We are extremely privileged in that we can afford to spend the time respecting one another's needs and quirks.

Now, some of my family have said that I am setting my children up for a gigantic fall because the world doesn't work that way in general. I agree! The world is not always respectful. However, I completely disagree with that being a good enough reason to not live this way.

Which brings me back to my original thought. The more respectful you are, the more respectful your friends and family will be and consequently, perhaps, the world will be too. How can that be a bad thing?

I firmly believe in the Ghandi quote, "Be the change you wish to see in the world". I want my children to learn by example. Just because I don't think what they are doing is 'valuable', it does not mean that it is not. Who am I to judge? How would you feel if someone diminished your passions? How different would your life have been had someone let you spend four hours colouring your picture to the best of your ability? Or letting you devour book after book alone in your bedroom?

I firmly believe in empowerment and I think that the best way to empower and prepare my children for their future is to let them discover who they are, what they love and where they want their lives to go.  I have long since let go of the notion that I know what's best for them (having a child with PDAs tends to do that). I don't. I can neither see the future nor can I dictate how they spend their time. and who they are.I resent people dictating to me and I see no reason why I should dictate to someone else.

As my children grow up to explore the world on their own, which I firmly believe they will, they will do so standing firmly in their own power and refusing to let people bully and manipulate them.

N x

Holiday Review

So, back in January, after a year of hard saving, my mum and I finally booked a holiday to Portugal. Albufeira to be exact. For me, the three little ones and her.

Now, those of you who have been blessed with the challenges of having special needs kiddos will understand when I say that finding a holiday that met all of our needs was not easy! Firstly we needed to fly from a local airport (Luton for us), at reasonable flight times (no red eye flights), with a shortish flight, at a quiet time of year, to a secluded, secure resort with no horrendously long transfers.

Long gone are the days when I can just walk into a travel agent, ask what they have available within a certain price range and just go with it! Oh no! Now it is a military style operation! However, all that being said, it worked out almost perfectly!

We booked with Thompson in the end. We chose a private villa with a pool (not too deep and not too big), a short walk from a beach, close to amenities, with enough room for 8 people across 4 bedrooms! We also booked a hire car. This is not the cheapest way to go on holiday and it is the first time that I have ever been on a villa break but I was not disappointed.


Before I tell you about the holiday, let me tell you about some of the things I did to prepare the children.

We went swimming a lot!
We looked at pictures of the villa and aeroplanes (toilets and all) a lot!
We did dummy runs of the airport procedures.
We bought chewing gum.
We bought tablet computers.
We bought ear defenders.
We bought comfortable slippers for Dominik as he refuses to wear shoes.
We bought headphones.
We bought boiled sweets.
We bought travel games.
We agreed who would sit near the windows in advance.
We agreed who would sit in the front of the hire car in advance.
We took drinks and snacks.
We checked in online.
We visited our homoeopath for calming remedies.
And finally we booked disability assistance.

Ok, the holiday!

The kids were obviously very excited and they are all old enough now that I can't bluff about when an exciting event is going to occur so I was prepared for them to have trouble sleeping the night before our 8.20am flight. We left the house at 5.45am with bleary eyes and butterflies in our tummies (mine were obviously for totally different reasons than theirs). They were sleepy in the taxi so were quiet and calm but as soon as we arrived at Luton they woke up! The fresh air, the noisy planes, the busy airport brought them all to attention!

We went straight to baggage drop to request our disability assistance. Well, there arises our first 'bump'. There was no record of the request! The lady at baggage drop tried her best and did manage to give us priority boarding which was something, it did not however help us navigate security!

Security was by far the most stressful part of the Luton portion of our journey. The queues were long, hot, slow and boring! My eldest child, Dominik (aged 10) could not bear the proximity of all those people and to make matters worse, he was asked to remove his ear defenders. :-( He did comply but it was incredibly stressful for him and he needed to sit down quietly and catch his breath before we could move forward through to the departure lounge.

I guess thankfully, the security process was so slow, we had no time to do anything apart from grab a quick snack (Krispy Kreme doughnuts) and head to our gate. The gate was a fair walk away but the promise of the aeroplane kept us all moving.

We did get our priority boarding...well, kind of....if you class it as being put on the bus first and then having to wait for it to fill up and then moving to the plane with everyone else!

We boarded the plane and found our seats (no problems there), we settled in for take off (no problems there) and we enjoyed a completely stress free flight. Yay! :-)

Once we arrived at Faro, things started well. No queues at Passport Control and straight through to baggage collection. Hmmm, well, baggage collection was a 40 minute wait. It is now 11.15am and hot! We don't have any more snacks and we have run out of juice. There is nowhere to buy any so my mum and I are wishing the bags through quickly! They eventually arrive and we move through to Arrivals looking for our rep.

We find her and discover that we need to get a bus to the hire car shop. This was unexpected. We were expecting to just go to a desk, pick up the keys and away we go! Nope. The mini bus can only hold 8 people and there is only one running. We can't get on the first one so we wait approximately 30 minutes for the next. Sigh. Hot, hungry, tired, thirsty children abound. No distraction is working now as their tablets are all out of batteries and they are simply too excited to be calmed. They run up and down, scream at each other, play in the wheel chairs (oops) and generally annoy everyone.

So, we arrive at the hire car venue and the wait is another 40 minutes (and a ridiculous amount of  hidden costs) before we get our car.

We get in our car after the children have let off some more steam (playing hide and seek, shouting through traffic cones, chatting to random strangers and screaming about how long it is taking) and we're on our way.

And you guessed it, we get lost. :-( A journey which should take 30 minutes takes closer to 1 hour and 30 minutes.

We're all still hungry, hot, thirsty and tired but we do make it to the villa at about 3.45pm. That is ten hours travelling. Exhausting to say the least!

But so worthwhile once the kids threw themselves into the cool pool and started their holiday!

The first afternoon was trouble free but by the time it was dinner time things were a bit fractious! I guess the exhaustion set in and everyone had a short fuse. Needless to say, we all had an early night!

Rather than  ramble on about each day, I am just going to talk about notable events.

1 - Day three was tough. Dominik had realised that there was no internet in the villa, that he was miles away from all that was familiar, that mosquito bites are annoying and that it was warm in the sunshine! He went to bed after lunch and did not wake up until it was dinner time. This is his was of coping with large amounts of stress and sensory overload. I first noticed this defence mechanism when we travelled home from Peru. As soon as we got on the plane for the 13 hour flight, he went to sleep and slept the entire time! The trauma of leaving our home, his dad, the first, internal flight and the 24 hour delay in our leaving (a whole other story!) sent him over the edge...the same happened in Portugal. He simply needed to recharge and regroup. Such an important and valuable skill for all children, not just those with special needs.

2 - We did not force Dominik to come out for dinner with us every night and my mum and I took it in turns taking the little ones out for dinner. We allowed them to choose where and what we ate at all times.

3 - The middle of the week was by far the best section of the holiday. They were all confident in the pool by now and were able to swim a few lengths no problem. They understood the sun cream drill! They had their water toys (dive sticks, snorkels, lilos, goggles, etc) and were enjoying playing all the different challenge games we could come up with (running across the lilos, swimming under the lilos, standing up on the lilos, forward rolls, backward rolls, hand stands, how many people could fit on a lilo and the list goes on).

4 - Dominik had one major meltdown on the Saturday afternoon. I think by now he was tired and ready to go home (we left early Sunday am) as he knew it was close. I think this is down to the idea of transitioning again. He had just gotten used to it and now it was time to leave. He was very emotional after the meltdown had ended and he was cursing his Aspieness openly (which he rarely does). We talked about it for a while and he eventually agreed to come out to dinner and we all had a brilliant last night. I am SO proud of his self-control, his stamina and his willingness to try again.

The journey home was completely incident free and quite nice really! We were all ready to leave and we were looking forward to getting home!

Now we are home, life has been nice. :-) The children are loving having their rooms and toys and consoles back. Dominik is loving having the internet at his fingertips once more! And I am glad to be back in my own bed.

So, if you're thinking of taking your special kiddos on holiday....go for it! It was totally worth it and I cannot wait to do it again!

Just remember: preparation, patience and praise!

Thanks for reading.

N x

Welcome to my first blog as an Avenue Mum!

So, how did I come to be writing a public blog?!

At the beginning of 2014 I was introduced to a (somewhat) local charity which focussed on providing parenting courses and offering support services for families with children on the Autistic Spectrum and with a diagnosis of ADHD. I was excited to go along and meet the team and I was very much hoping to be able to lend a hand in some small way.

Well, as it turned out, the charity and I were not a great fit (my Aspieness being partly to blame!) and the relationship did not last long.

As time passed, I became desperate to share some of my knowledge with those who most needed fresh ideas so I began looking around to see what else was out there.

And then, through a completely unrelated contact, I discovered the amazing Sarah P at The Avenue (based in Biggleswade, Central Bedfordshire) and everything fell into place. She is dedicated, thorough, hard-working, caring and determined and she was the one I wanted to give my time to. It was serendipity in action!

Sarah asked me to become an official volunteer and here I am! I agreed to work on The Avenue's already bulging information folders (adding what I know about alternative therapies/approaches, filling in any gaps in the home education information and providing an overview of PDAs (Pathological Demand Avoidance Syndrome)). I have also agreed to administer our growing yahoo group (ASPEE - Autism Support for Parents, Professionals and Educators) and of course, write a blog!

So, a little about me and my family.

My name is Natasha. I am an almost 37 year old Aspie single mother of 3 (soon to be 4) little ones. We live in Bedford, Beds with our cat (Sonic), dog (Tia), hamster (Cherry) and brand new snake (Strawberry).

My little ones are as follows:

Dominik, aged 10, ADHD, High Functioning Autism (PDAs), Dyspraxia, Sensory Processing Disorder, Central Auditory Processing Disorder, Giftedness and Misophonia.
Hannon, aged 7, NT across the board.

Lily, aged 5, High Functioning Autism, Auditory Processing Disorder, Sensory Processing Disorder.

Bump, 19 weeks. :-)

We have travelled extensively with two of my children having been born abroad (Valle, Gran Ray, La Gomera and Los Organos, Peru). We have been living back in England since 2010 due to a family breakdown.

My working background is in youth work, childcare and teaching and ever since I can remember, I have wanted to inspire little people to find themselves and to be the best that they can be. I completed a degree in Law and Criminology from the University of Sheffield in 2000. I have also lived in America and South Korea prior to becoming a mum.

We have always been an unschooling family! I never intended to send any of my children to school (and it turns out that that was an instinctive and profoundly massive decision on my part). We have a simple structure with a set bedtime routine. The rest of the days we work around our challenges and work on our strengths.

Over the course of time I will be sharing with you our highs and lows, and hopefully helping all you sceptics to see just how well life can work for those on the Spectrum if you are able to let go a little and trust in their ability to find themselves.

It's gonna be fun!

N x