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