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

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