I wish I had a bigger voice for our children

Not just for my boys, but for all children with autism.
My book, A Parent’s Guide to Autism was published in June 2016.  It’s been a long, slow road to get the book ‘out there’. I’d like to say, it’s been a long, slow road to get my boys where they are today too and a much harder one on every level, emotionally and physically both for them and for us.
The reason I mention the book is that it was written to raise awareness of autism and everything that means, to spread the word about what families need to do to help their children every single day. How they need to firstly ‘accept’ their child’s diagnosis without totally ‘accepting’ it.
If I had just ‘accepted’ my boys autism diagnosis, then I would never have fought through tribunals to fund their early intervention programmes, vital ABA therapy which has changed their and our lives.
I would not have spent hours potty training them, trying to get them to eat new foods, trying with every ounce of love I have to help them to live life to their utmost abilities.
I like to think I have succeeded. My boys now are so different to how I could ever have dreamt of them being. They have been worth every minute of those 16 years of ABA and all the other hours in between, when I encouraged them and stimulated them and loved them.
Now that they are all in school/college full time, apart from their 21 weeks holidays, I can start doing a bit more to raise awareness.
I am still waiting for my agent to secure me a book contract for my next book which is written and ready to be catapulted out into the general public. I hope it will give me a bigger voice to publicly speak out about some of the many issues we parents and our children face.
Meanwhile, I will continue to raise awareness via my first book and by writing this Facebook blog and hope that soon, I will get that voice.
Currently, my book is available online from wordery and some other stockists for only £11.08. It is also in Waterstones books at the RRP of £14.99. Please spread the word and help me get a voice.

World Autism Awareness Week

What to write? What to do?
I feel humbled by the Down’s community who have made a carpol video which has gone viral for their awareness day. They are all united. #wouldntchangeathing
The autism community is not united. There are so many ‘sides’ to take , so many angles.
Twitter is a terrifying place. The adult autistic community who are out and proud of who they are assert themselves and that’s good. We need the world to recognise everyone within it and that includes the autism community. But, the flip side is that those of us mothers doing our best to help our children to enjoy the world that they live in are often critisised and questioned about how we can understand our children when we don’t have autism ourselves. Perhaps we do too, but that is not a consideration.
I worked as an A & E nurse in my previous life. That is, the one I had before I had four boys with autism. Patients did not tell us that we couldn’t care for them because we had not experienced what they were going through. Does every midwife need to have had a baby in order to assist a mother to give birth?  So, why are we as parents sometimes thought to be unable to understand and help our own children?
High functioning, high media profile adults are given the same label, the same ‘one size fits all’ diagnosis as those children and adults who may never speak or live independently, who may additionally have learning difficulties.  Autism is a single word expected to cover a huge breadth of ability and disability. That does not help to unite the community.
I am, as most people will know, who follow my blog and Facebook page vehemently pro ABA (Applied Behaviour Analysis) early intervention.  My boys were all non verbal and destined for institutionalised lives when diagnosed with classic autism at the ages of 2 and 3. ABA has totally changed their lives and their outcomes. This is not a blog to wax lyrical about ABA and I know for some it may not be the therapy they choose for their child, but, I believe it should be a choice for anyone who wants it.  Those who do not want to do it, should refrain from critisising those who do and remember that the government would not fund a therapy from public money which had not been scientifically validated.
I do not seek to tell anyone what they should do but rather to offer suggestions and personal experience and would not openly judge others for methods they believe to be right for their children. We all need to support each other, not argue with each other.
A word often used by everyone in the autism community. It is want we all want. Acceptance for what is perceived by some as difference. #differentnotless.
But does acceptance mean we stand back and do nothing to help those unable to communicate?
Do we want a cure? Do those with autism want a cure? This is the area which divides us all. The most touchy subject. The one that causes the most arguments.
Would we cherry pick if we could? the ‘good’ bits and the ‘bad’ bits of autism? How would we even define what those are? Ask anyone who has autism or whose child has autism and you will get a different opinion.
We need to unite. We need the autism community to unite. We need to present a united front.

Snow, Snow, Quick, Quick, Snow.

It’s a snow day! yay! Another day off school. Another day to go sledging.

My boys love it.  We haven’t had any real snow in London for five years so I don’t blame them wanting to make the most of it while it snows.

They can cope with a total change in routine. They don’t mind getting a bit cold and wet. They have no fear and would whizz down the icy hills for hours if I wasn’t freezing and dragged them back to the car.

The only downer was Hector had a proper Btec exam today and really wanted to get it over and done with. I had been chanting ’10 mins of revision and you will never have to do science ever again after Friday’ just to try to get him motivated.  We finally agreed to try and drive him to his school last night for him to stay over but the roads there were treacherous and we couldn’t risk it. Safety is more important than an exam. I do feel bad for not getting him there but I couldn’t do it.

All four boys have been snowed off for two days. Just two days, but it feels like that endless twixmas period when you have to keep them occupied and still do everything else. Dear direct payments providers, can we claim snow day hours please?

I keep thinking of those other parents who work, who rely on schools to be open and of course, those parents whose children are more affected by autism than mine are. There was a family today with a boy, probably on the spectrum, who kept walking in the middle of the sledging lane, in danger of a collision. He slipped over and howled miserably. He wasn’t hurt but he yelled like he was. He was so out of his comfort zone.

My boys in contrast have no fear and seemingly, very high pain thresholds. Thomas slipped badly yesterday and landed on his back on a sharp step. He dusted himself down and got on his sledge, a fall was not going to stop him sledging. All the boys went flying down the hill with no cares, no fear. I have learnt to watch and hide my fear for them. What if they hurt themselves? what if they collide with a tree? I myself am pathetic, a big coward. I wouldn’t get on a sledge. But, their Dad came today and he got on his childhood sledge which is over 50 years old and down he went too.

I feel for the parents who hear the joyful words ‘It’s a snow day’ and are not joyful at all. Who need that respite break that school brings. Who rely on tutors or school to look after their child for a few hours. I hope for them that the snow clears soon and the daffodils come out and life is again manageable.

But we will enjoy these few days, making memories, having good old fashioned fun with our happy, pink cheeked boys. But just for a few days, I am longing to see those daffodils again too.