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

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