And 2016 gets off to a flying start!

Where to begin?

Happy New Year to you all. What a whirlwind this year has been so far. It's like someone opened a door way or something. 'Stuff' (for want of a better word) is just flying into our lives,.

It is breathtaking in its speed.

But first a few thoughts on Christmas this time around.

Aside from one event, it was brilliant. I can honestly say it was all about the things that truly matter. No one was that fussed about presents (although they all love their tablets), it was about spending time together and having fun.

We had very few visitors but the ones there were made the event all the more special. I do wish visitors would have a little more time for everyone when they came though, but at least they care enough to come and see us. I love you all and we appreciate your time,

One small request on behalf of the kids before I move on,. Please try to to show a little interest in what they've been up to! I know its not the same as asking a child who goes to school, but try anyway! I know they bombard you with lots of information and that its mostly about things you've never hear of or things you have no interest in, but, well, ABC's  and mental arithmetic don't count as interesting either really if we're honest. What I am trying to say is that we should simply celebrate enthusiasm and happiness whatever the cause! My four would love to show you what they've been doing. They LOVE what they all do. Please, try to reserve judgement and witness what they are all achieving, even if it isn't something 'mainstream'. I think it is all the more impressive because it isn't! The 'mainstream' is exactly that...it is what most people can learn during the course of their everyday lives. It is the majority, the ;normal', the (dare I say it) mundane. Listen and watch what kids have to show or tell you, whoever they are. Listen even more carefully if they are passionate about it. This is where the true learning experience happens. Especially if they are passionate about. It is important to them. We ask children to pay heed to what is important for us (and society in general I guess) a lot  of the time but sometimes perhaps, we should spend some more time listening to them.

So, yes, where was I...The New Year!

Here's some of what has been going on. Obviously keeping a positive slant on it all. I don't find focussing on the bad bits helpful because they would then over shadow the progress and I don't want that! There have been some tough moments, of course, but what follows could not have happened as it did/does, without them. Every experience is a potential learning experience.

 # Lily!

Lily is pretty much reading fluently, and she is reading words that she doesn't know and they rarely pose a significant problem. She took to the 'hoverboard' like a duck to water. (No, it hasn't caught fire.) She was an amazing hostess at her own Birthday Party. She took to ice-skating like she was born to do it. She is a born 'mover'. Not sure where that will take her but I am sure it will be far. Her innate talent and the ease with which she learns new skills is inspiring. Her vocabulary and maturity also continue to amaze me. For example. we had our 11 year old dog, Tia, put to sleep in December and Lily chose to stay with her until the end (with my mum). Just incredible. The vet tried very hard to guilt me into removing her but I gave Lily the choice and respected her decision. She was amazingly pragmatic throughout. She was a little sad, but, she was also completely accepting and full of love. I am so proud of her. What an amazing human being. She has only spoken positively about Tia since she died and seems to be happy with the desicion she made. (As are Hannon, Dominik and I and we chose to leave.) Love you Lily.

 # Hannon

Hannon it seems is a GAME MAKER. He spends significant periods of time creating and refining various different game ideas. He researches his options. He learns from other people. He experiments with different ideas. He and Lily do 'voice-acting' for their own characters too! He also never. gives. up. His tenacity is awe-inspiring. He is so determined to succeed. It makes me so proud. He tampered a bit with magic over the holidays (and engineering) but has left those behind for the time being. He has also found the time to read at least 12 books since November and it is staring to get expensive!!! But, I obviously cannot complain.. It is simply a running joke.  I even went and bought him his own bookshelves and he is actually using them! Yay Hannon. I love you.

 # Dominik

Dominik has made some massive strides too. He has completed over a month of daily exercises designed to lengthen and strengthen the muscles etc in his lower legs. These can be painful and the demand from me is a daily one so I would never have guessed he would have this much staying power. He is giving this his all. I think a physiotherapist would be able to support him now he knows he can do it. Great progress.  He has also showered twice on the same day that I have asked him to do so! (A miracle for a child with PDA and SPD.) He has also been letting me brush his teeth...not everyday, but more than ever before! He continues to improve his sketching skills (with a new rubber and pencil sharpener) and practices almost daily. He has rediscovered his love of music and all things rhythm based. He seems to be 'pitch perfect'. He can whistle the tune his tablet whistles when he gets a notification and there is no discernible difference. He almost beat me at Just Dance too!!! (Unheard of!!! Along with Mario Kart, Just Dance is about the only other game at which I can do well!) He found something called a Lauchpad and is desperate to try one out. We discussed it and after having talked about the benefits of him having one of these, we actually discovered that he needs (and would prefer) an electric drum kit into which he can programme all the sounds he likes! And, the boon, we don't all have to listen to his creativity. (This will build on all the times we spent playing with Synthesia and a couple of other rhythm/music based visual games (DJ Hero being another)). I cannot begin to imagine what he will create but we are both itching to find out. I also think that the drum kit will have many more benefits...not least of which will be to further strengthen his legs and improve his physical health. His motor skills will also surely take another leap forward as will his proprioceptive skills I should think. This is just brilliant! Alongside his parkour and his rekindled love of creating his own smoothies really bodes well for the future! So proud Dominik, so proud of you. Mwah. Love you.

See, I told you 2016 hit the ground running!

And now for Harriet...well, that would be an essay! She's the best! You'd have to meet her to truly appreciate her awesomeness though. Suffice it to say, she LOVES to climb, point, bite and smile. :-P

And finally, here's my favourite (of favourite ever) picture of our Christmas 2015.

Too. Funny.

And no, Hannon was not like that all the time.

And a dear friend made all the hats for us. Thank you Cara!

Oh, and, the photo was taken by a lovely friend who spent Christmas Day with us. She also brought her beautiful shitzu -yorkie cross. We had such a lovely time.

It was certainly a Christmas that we will remember as being full of smiles and love.

Oh, and we did buy a few family games but by far our favourite is Sushi Go! Lots of fun. Deceptively simple, tactical card game that is hilarious and sneeky (think Uno I guess)!

Happy New Year!

N x

Ups and Downs.

As is becoming my way, I wrote this in response to a message from a friend and it sums up where we are at nicely.

So, I honestly cannot think of anything that we have been doing in particular that is noteworthy but I do know that I am utterly EXHAUSTED!

Half-term turned out to be quite busy I guess with a couple of trips to woods (mushroom hunting and tracking and then making wands and pixie dust), some shopping with mum for my birthday (Fly boots rock!) and then some friends visiting here and there (one day I had 8 children in the house...arghhhhh!).

I guess I am doing ok but I am still a little lonely. It sucks not having anyone to pick up the slack when I'm tired or stressed out. At the end of a bad day what I would not give to have someone to chat to about what happened. What I would not give to have someone bring me a coffee in the morning, just sometimes. I do begin to go a little crazy inside my own mind some days.

This especially applies after Dominik or Lily meltdown and I've used up all my energy (which is usually at a pretty high level!) sorting them out and then there are still Harriet and Hannon to support in the aftermath.

Yesterday in particular was bad. Dominik has been having serious trouble sleeping again (we're talking between 4 and 6 am to fall asleep) so yesterday, when we had to get to parkour for 1pm, he was shattered and not in any fit state to get through it. I was dreading it before we got out of the door as he insisted on wearing his new trainers despite not having even worn them in the house yet! Yup, setting himself up for the inevitable fall.

He had the most massive public meltdown he has had in a very long time (so long in fact that I can't recall the last time) and it was spectacular. 

Swearing, kicking, shouting, punching and crying all at the top of his very loud voice in a very small gym.

It was all because he could not agree with the other children where his place in the line was and then, because they all disagreed with him, he felt that they were bullying him. It was heartbreaking trying to explain to him that it wasn't bullying and that it really wasn't that important. But, as those of you with Autistic children already know, this is a fruitless endeavour because it was not as he needed it to be in order to manage.

They all said his spot was somewhere different (because he had left the line to speak to me and change his shoes) to where he had begun and he just could not manage at all with that yesterday. This has never happened before and Dominik has been going to parkour since September so that is an indicator of just how bad he was feeling. It has highlighted to me just how massive his needs are when we are not in 'optimum state'. It has also been kind of a 'blessing' as I have the dreaded DLA paperwork sat in my kitchen waiting to be completed. Sigh. What a soul destroying job that is.

On to Lily then. She is pretty dire too right now. She is having trouble sleeping also. Not quite as bad as Dominik, but about 2 am. She is grumpy, argumentative and easily stressed most of the time if things are not kept calm, predictable and as she likes them to be. This is perhaps even more tiring than Domink if I'm honest. She will not be rushed, she will not be told what to do and she will not participate in anything aside from riding lessons.

I think before Harriet arrived this was fine because when they were up all night, I would be too! We would do all the things we would usually do during the day, at night instead so I felt ok about everything.

But now, obviously, Harriet gets up at around 7 am and I need to be up then too. I have to get to sleep before midnight or I cannot function at all and I start becoming more Aspie by the day and meltdown left right and centre over things that are just not that important (like a crumb on the worktop or a shoe on the floor) . This does not happen when I am doing well! Having the two of them going through a rough patch at the same time is pushing me to my very limit that is for sure.

Hannon however is AMAZING (thank goodness). He is excelling at parkour. Loving his running machine. Utterly focussed on becoming strong, fit and healthy. He is still programming his games with aplomb. He is now learning how to do some video editing and working on improving his spelling, grammar and punctuation (although he doesn't know that!) through his video uploading and responding to peoples comments.

Harriet too is AMAZING! She is above the 75%ile and growing beautifully. She is cruising, landing on her bum, kneeling up, clapping, waving, blowing kisses, almost standing alone and generally enjoying her new found communication skills. She is happy and content, loves being read to and enjoys playing with her big brothers and sister more than me! She also loves to eat although still prefers the breast!

I have just taught myself some basic crochet skills so have made Harriet some leggings and am making her a matching bonnet now. Feeling proud of that!

So, there you have it! Not a bed of roses but still ticking along.

On a final note, I am going to be doing some informal chats at The Avenue support group next week which is from 12.30-2.30 pm on Tuesday, November 17th at The Pentecostal Church, Crab Lane, Biggleswade, Beds, SG18 0LN. If you would like to come along and have a chat please book by sending an email to - theavenuesupport@outlook.com

Thanks for reading,

N x

Our latest experiment!

It occurred to me today that it might be worth mentioning our latest (somewhat unusual) project.

For a long time now my oldest son, Domink (PDA, ASD, SPD, APD, dyspriaxia, ADHD, misophonia, urgh, and the list goes on but basically simply adds up to 'hypersensitive in all areas of perception' and 'n'th degree human being! Perhaps an evolutionary step?! Who knows, but these young people are coming through loud and clear and telling us that society is breaking down...they can't live in it any more!!! But ask yourself this, is the world they would prefer worse than the status quo?

Woah, massive sidetrack, sorry.

So, yes, Dominik has been asking for a room of his own. Specifically, the front room in our house. Traditionally, the living room I guess.

I have resisted and resisted and have kept telling myself that it would make life far, far worse as he would then have to self regulate his computer usage, his space and his time alone. Massive changes. Big gulp.

So, back in May, I finally agreed, on the proviso that he gave me his months allowance toward the furniture, bed and mattress and that he helped me moving his things into his new room. He agreed and we bought what we needed.

We then came to a hurdle. I did not have anyone who would be able to help me move the big sofa upstairs to what has now become our sitting room/living room/Hannon (and oftentimes, Lily's) bedroom.

I soon bit the bullet (amidst all the nagging from Dominik) at the beginning of June and paid someone. He did a few other jobs that had been depressing me too so overall, I guess it made us all feel much better!

Dominik moved downstairs just over two weeks ago.

The first few days were very rocky!!! I was stupid enough to push my luck and unfortunately, Dominik had a massive meltdown in public, which he hasn't done in an extremely long time.

I'd forgotten what they were like to be honest and I don't miss them one bit!

So, yes, I encouraged him to come out with us on 'moving day', even though he had already struggled to hold it together all morning and had been particularly dictatorial. Sigh, When will I learn?

He really wanted to please me (as a thank you for getting his room done) so he made himself come.

Well, yup, we learnt a valuable lesson at the same moment that day and it has changed our relationship in a big way and for the better. We both now know to be more mindful and to not try to be 'normal' even when it appears to be the right thing to do. We knew we had tried too hard and we failed.

Right moving on. Since that first day, life has changed.

Dominik is spending more time out of his 'room' than ever before! He even sat in our new living room and watched a WHOLE MOVIE with us! Without freaking out and spoiling it for everyone (do your kids who are on the spectrum do that, or is it peculiar to just mine)? He did meltdown as soon as I left to get everyone a drink but, nevertheless, it was a massive improvement.

He is choosing how he spends his time really well. Yes, he is still playing a lot, but it is different now. With the constant threat of it being taken away gone, he is clinging to it far less ferociously.

He will eat with me.
He will come and chat with me in the kitchen.
He came out for TWO picnics over the last week.
He played a game with me!!
He is a godsend when it comes to helping me with Harriet. He is by far the most amazing with her....she always laughs for him! She adores her biggest brother and he her.

Hmmm, he did have a meltdown yesterday though.
He desperately wanted to see 'Minions' and I said yes without hesitating and booked us tickets Thursday and we went Friday.

Well, he lost the plot before we left because we wore minion glasses and Lily went one step further and face painted herself yellow!!!

I thought it was brilliant and encouraged her. Well, Dominik went crazy saying he would be embarrassed and that it was "****ing stupid". He ranted and raved and demanded to be able to punch Lily or else he couldn't go. He was being completely outrageous. He ran off with the car keys at one point!!! How did he get those I hear you ask? Well, I had given them to him so he could go and get in the car first to try to avoid a fight! Yes, that was stupid!!! Hannon even told me so! Hahaahahahah! He insisted he wasn't going and I said fine, my mum was with us, so he could stay with her.

So, I get the keys back from him and he swipes at Lily, I escort her out to the car and belt her into the front seat. Dominik decides he wants to be in the third row (exactly why I need one, DLA, do you hear me) and I put down the seats and get him in sharpish.

Harriet and Hannon get in the middle. We're all set! Deep breath.

As we pull away, Dominik is in floods of tears.
He could not apologise enough.
He was devastated and hyperventilating.
I told him how much I loved him.
Hannon told him that it was ok and that he understood that it was just a part of his Apsergers.
Lily said she forgave him.
I told him it was in the past. That we got it, that we were really proud of him for coming with us, that we knew he could do it and that it was time to go and enjoy the film together.

It was plain sailing from there, with the three big kids behaving impeccably from there until we got back to the car. Harriet was excellent the whole time.
Lily proceeded to fall apart once back at the car.
Hey ho, we talked her down and laughed about how Dominik is more like to freak before we go out, Hannon is most likely to do it while we are out, and Lily, without fail, will do it as soon as we are leaving and she lets her guard down! So strange! I tend to do on the way out and on the way in! Not my best moment and definitely the times when I am most likely to lose my temper and need to take a time out!

So yeah, I think giving him what he wanted is paying off. My house is a happier place.

Lily loves being able to stay with Hannon (and even though he says he hates it, he keeps letting her come back even though I back him 100% if he doesn't want her stay with him).

Hannon loves that I can go and sit with him lots more during the day :-)
He can read for me now too in a quiet, comfortable space, and that is excellent. Massive hurdle jumped. He even read the promise at his Cubs going up ceremony better than the other three boys going up with him. So proud because when he started Beavers he was one of the only ones who did not read at all. Look at what he's done! He read a page to me a few days ago from "Soul Eater" and the only words on the page that he could not read were 'Pharaoh' and 'tornado'.

(NB an article I came across today adds to the idea of self-teaching in general.)

Dominik is so happy now he controls his own space.
He is even putting washing away, emptying his bin and bringing out plates and cups. Having ownership has helped in a big way.
His self-awareness with regard to his meltdown Friday was inspirational. I love him so much. I cannot believe how far he has come.
He was complimented by his hairdresser this week too for being able to sit so still and being so polite.
He has been going to the shop confidently by himself.
He has sworn less.
He has been quieter.
He has been sleeping more.
He has been nicer to live with.

But still, and most importantly, he really is so much happier.

The gamble is paying off ... for the time being at least.

Sending out progressive vibes for you all.

Thanks for reading.

N x

Some cool moments from the past two weeks.

On our way to see 'Minions'.

Lily and Hannon out with their Dad.

Dominik photo bombing me and Harriet!

Observation without assumption

Sunday we had a visitor.

Ordinarily this would not be blog worthy material but, I mention it (mostly) because she has been such an important part of our journey (and instrumental in furthering my understanding of my children), and also because she is such an inspirational lady.

Her name is Felicity Evans. Yes, I have mentioned her before here in my blog-life, but she certainly deserves another mention today. Her visits are fleeting and far between due to the fact that she still works full-time at Nature Kids whilst also watching over some of those children who have long since left her care and can no longer even be called children!

I open the door to find her laden with bags (as always)! She has a plethora of outdoor toys (shuttle cocks, hula hoops, bats, balls, boomerangs and more), clothes for Harriet and healthy snacks for all (serving to remind me that I must do better in this regard). She never fails to delight us all upon her arrival. She seems to have an  instinct for what we all want/need and I marvel at her intuition.

A visit from Felicity is valuable for me on so many levels. She 'sees' my children for one! Such a revelation. She also never fails to notice just how intricately I manage my household (reminding me that true professionals make whatever it is they are doing look easy). She delights in mine and my children's idiosyncrasies and allows us all to be completely ourselves.

Let's flash to when she drew up for a moment in order to illustrate this better.

I want to paint a picture of what Dominik was doing, literally, as he watched her pull up in her car.

Background -

His little brother broke his television a couple of months ago so, I put a claim to our insurance company and was given the money to replace it. I did this and I 'upgraded' it while I was at it. It is much bigger and has much better picture quality than his old one did.

The picture quality is where the problem has arisen and Dominik is convinced he should have the new television because 'he cares more about the graphics' and his 'PS4 has the ability to make use of those better graphics and the PS3 doesn't'.

Both of these things are indeed true.

However, Dominik was offered a new television at Christmas which he turned down in favour of the PS4. Fair enough. End of discussion as far as I am concerned.

Fast forward to Sunday.

Dominik begins chasing Hannon around the house screaming and swearing at the top of his voice, that he is going to swap the television for his and that is that. We have already been over this dozens of times at this point and Dominik knows that I am NOT going to change my mind. For once, Hannon is going to have something brand new and excellent all for himself.

So, I open my front door as I run past it (baby in arms) trying to intercept Dominik and free Hannon before it turns violent. I scream "Come in!" as I pass. Dominik now has Hannon cornered in the kitchen where he is cowering under the table. Bugger.

I manage to put myself between them for long enough that Hannon can escape back upstairs to sanctuary.

Felicity has come in and as she enters the kitchen. I introduce her to Harriet. Meanwhile, Dominik is still swearing and shouting at me about the television.

I do my best to empathise and console him (this works most of the time) but to no avail. He drops to the floor and crawls under the table. I try to coax him out with promises of pineapple and strawberries and by encouraging him to smile at Harriet, but he is having none of it today. Oh well. I look at Felicity and she beckons me to leave him be, so I do.

We continue our 'Hello's' and within about 3 minutes Dominik has crawled out from under the table (perhps sensing that it is safe to do so?), with his hand covering his face declaring that he doesn't want to see anyone and just wants to be alone. We watch him go.

Felicity then quietly comments on how calmly I handled the situation and, more importantly, she points out how amazingly quickly and well Dominik handled the situation and was able to self-regulate and calm himself down.

She is right. In recent weeks Dominik has been far more capable of regulating himself on lots of levels (although not all as the incident in the woods evidenced). He no longer eats copious amounts of rubbish food, he steps away from the screen when he needs to, he comes out with us far more regularly (provided it is not too far in the car), he showers when he thinks he needs to (this isn't anywhere near as often as I think he needs to, but, well, it's a start) and he knows what actions to take when he feels himself losing control.

What an amazing achievement! Some people arrive at adulthood, with no special needs whatsoever and can't manage to do that.

Thank you Felicity for helping me consciously observe Dominik.

Thanks for reading and please, if you have any thoughts, please do share them in the comments or by email.

Take good care.

N x

Controversial (or not) Christmas ideas. First published 2014.

I thought I would write a few words about Christmas and how it's going for us this year (and it is an excuse to post a picture of my tree which is, honestly, the best bit for me)!

So, for those of you with little ones who are at school, I imagine this time of year must be particularly challenging not least because of the following;

• Mufti-days
• Carol Services
• Timetable changes
• Nativity Plays
• Decorations
• Staff absence 

to  name but a few of the school based changes. 

But what about if we include;

• School holidays
• Visiting relatives
• Christmas Trees and decorations
• Furniture being relocated
• Presents (and the accompanying anxiety)
• All predictability vanished
• Extra people everywhere

And perhaps even;

• Parties
• Father Christmas himself
• Family events
• Photo ops
• Different foods
• Different clothes
• An abundance of chocolate/sweets and treats everywhere
• Anxiety at its maximum surrounding the idea of being 'good/well behaved/deserving'

This is perhaps the most challenging time of year for us families with children (and adults) on the Autistic Spectrum so I thought I would share with you a few of my ideas designed to make life a little less stressful.

It is my hope that they will help things to  run more smoothly (and joyously), in your home too during this Christmas Season.

Preparation, Preparation, Preparation.

This cannot be said enough! Prepare to the nth degree!

Let your child create their own special visual timetable (in the form of an advent calendar maybe) so that they can anticipate all the events at school and at home. Let them talk to you about everything that they remember about the changes and how that makes them feel and what they feel they can and cannot cope with.

Enable them to choose, to as large an extent as possible, what they want to participate in and what they don't in the school calendar and respect their wishes. Be the best advocate for child that you can be and ensure that they get the Christmas they want too. Struggling is not a nice way to live at any time but at Christmas, when everyone else is smiling and happy, it must be even worse.

Bribery & Coercion

I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmastime comes around. Children all over the Western world are worrying themselves half to death about their behaviour and whether or not they have been 'good' enough to deserve presents.

It is my firm belief that children will do well if given the environment in which they can do well.

Our special children are already doing their best all the time to manage without breaking down, so at Christmas, when there is so much more at stake, perhaps we should avoid pairing their behaviour with the promise of presents?

A lady told my daughter only the other day that if she 'screamed like that' Santa would hear her and she wouldn't get any presents. Not only was this extremely distressing for my daughter but it was horrible for me too! I do not use this kind of carrot and stick system in my house as a rule (I'm not perfect) and I have to say that to hear it come from a complete stranger was horrifying.

My daughter had been having a difficult (and busy) day and she was getting to the end of her ability to cope (several different shops, in and out of the car, hungry and over-stimulated) and this lady simply made things 100% worse. Sigh.

So, yes, try your hardest to not equate their behaviour with good/bad....they are trying their best.

Shopping/Trips

Please, please, please, unless you have absolutely no choice (or alternatively, they want to come along), let them stay at home! The world is a crappy place for those of us who shun noise, smells, lights, people, being touched and garishness right now! Unless your little one wants to plan a trip (and gets complete autonomy over what happens on that trip, including when to call it quits), don't make them come along.

Visitors

Keep the number of visiting friends and relations to an minimum, or, at the very least, let your child hide out in their room (or in the room that is most comfortable for them) and do not force them to socialise if they don't want to.

As an Aspie adult I can tell you, being made to kiss, hug and chat to people who are basically a load of strangers, is traumatic and exhausting and certainly not 'fun'!

Please be an advocate for your child and warn any visitors, that if they are bringing presents, to expect them to be unwrapped on sight if they are seen by said children! If they do not wish for this to happen then should wait for the opportunity to 'sneak' them in unseen when they can be safely hidden and not add to the anticipation that our children are already feeling with regard to unopened presents.

Also, tell these same visitors what treats/sweets/foods are acceptable in advance so you don't have repeated meltdowns over food.

If you can, decline any invitations that are non-essential. Visiting lots of different homes is stress-inducing due to the amount of unpredictability.

If you do over-do it our little ones will soon unravel and will not have a chance to regroup and recover, and will therefore end up not enjoying the best bits that Christmas has to offer.

Decorating

Allow your child/children to take whatever role they wish in decorating the house and tree (or not). If they are anxious about decorations perhaps put them up as late as you can in family areas and allow any other children to decorate their rooms so that they don't miss out.


I guess you may be curious as to how things are going with my brood in the run up to Christmas this year...well, let me tell you!

• I let them choose when to put up the tree and allowed them to dress it with me (spiking my OCD to the max let me tell you!).
• They are able to make a Christmas List the whole year through and add to it and take things away from it right up until December 1st ,when their lists are officially 'closed'. This is the same every year and it seems to work well and helps to avoid any anxiety associated with 'choosing' and being 'rushed' into decisions. (They also know that once December 1st arrives, there are no more 'incidental' treats as all my 'spare' money goes towards making Christmas awesome).
•  This year, once Dominik had decided what he wanted, I went and bought it for him straight away and gave it to him. He knows he will only have stocking gifts on Christmas Day now (and any presents that people have managed to sneak past him) and this has enabled Dominik to focus on everyday...the here and now...and not on the 'what might or might not be coming' in x number of days. It is the anticipation for him that is the hardest part of present receiving occasions, particularly Christmas, with the Advent Calendar, people constantly asking about his list, people coming to drop off presents and being offended when he wants to open them in the instant he sees them, and of course, people reminding him to be 'good'. So, as much as I get lots of 'tutting' and 'sighing' from friends and relations, I don't care. He is not spoilt. He is happy and calm. This makes for a happier and calmer time for us all but especially for him. Phew. 

I have implemented all of what I have listed above and, touch wood, so far, this has been by far and away the most amazing build up to Christmas there has ever been in my house.

It is a magical time of year so here's hoping it is for all of your families too.

Merry Christmas!

N x

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

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