Thursday, 23 February 2017

Why don't I live near the sea?

I love the beach. I love the sea. And although my dream would be to live somewhere warm with water you can swim in and sand you can lie on without thermal underwear, I even love the British coast. As you will see, my photography has a strong coastal theme too!

calm sea at dusk Orford, UK

So why don't I live there?

Even as a teenager as soon as I got my driving licence I used to head down the M5 towards the West Country for my seaside hit. I love watching the water on calm days and stormy days make me want to park up my car bear the front and eat hot vinegar-laced chips watching waves crash onto the beach through a steamy windscreen.

Southsea beach, Portsmouth, UK

My son and his partner live in Southsea, Portsmouth and he admits they rarely head to the beach even though it's only about ten minutes walk away. Maybe I would be the same if I actually lived there.

wrecked boat, Orford, UK

My mum lives a similar distance from the coast in Cyprus and when we visit we spend lots of time of our favourite beaches, swimming in the sea, snorkelling and enjoying spectacular ocean views. But even she admits, unless they have friends and family visiting they rarely spend the day on the beach acting like holidaymakers.

Latchi, Cyprus

I love that programme about people wanting to move to their favourite holiday destinations - today was Costa Rica and it almost made me want to move there it was so beautiful! Almost everyone on the programme states they want to be in view of, or within walking distance of the beach.

I'm too cowardly to up sticks and move I think. It took all of my courage to move to the Home Counties from the Midlands when I got married. That was 25 years ago and we are still in the same house. It got very overcrowded for a while and we did think about moving but we managed and we are still here with more and more space as our birds fly the nest.

Sunset at Southsea beach, Portsmouth, UK

We talk about moving to Cyprus when all of the children have left but I wonder if I could bear to leave them so far behind in the UK. It's more than four hours to fly and even modern face to face video communication can't make up for a real life hug.

Sandy beach at Margate UK

Maybe if we moved to the seaside we would get bored with it very quickly? I live on the edge of a beautiful forest which is popular with tourists all week round but I confess we rarely go there ourselves now. It's nice to have as a backdrop to the village though.

Leaving Isle of Wight

For now I will have to content myself with visiting my family who live near the sea. Already planning which beaches we will visit for our 25th wedding anniversary trip to Cyprus in May. All I need to do now is to work on my post-winter flab so I don't scare the other holidaymakers!

Isle of Wight

Wednesday, 22 February 2017

You have no idea. When people doubt your child's #ASD diagnosis

My son is bright, chatty and makes eye contact. This does not alter the fact that he has autism. Sadly though I feel like I constantly need to "prove" his diagnosis to well-meaning folks who think everyone with autism is like Raymond from the '80's movie Rain Man.

madmumof7 and son with autism

I have been told I should "make" him do things. I have been advised I should just get him to "pull himself together." I have seen the looks as I try to deal with episodes of distress in the playground and just know some of these parents watching are thinking I am failing to end a tantrum.

I am lucky in that I have a few close friends who, even if they don't believe the diagnosis (I'm not sure they all do) they at least try to be supportive. But there are many more who don't.

I've had people point out occasions where they've noted him being "all right." When he has talked to them "normally" or they've seen him playing. They do not see the endless effort it takes for those brief times of peace, the preparation both verbal and in practical terms.

I carry round what I used to call a "baby bag" stuffed with bits and pieces in the name of "just in case."  Food, toys, ear defenders, and other tools we are learning to use to make his life easier.

Sonic the Hedgehog

Therein lies the problem I think. Observers think we are all about making his life easier. I should change that word to bearable maybe. Without his ear defenders, his giant hat with ear flaps, his toys and gadgets which help him shut out the overstimulation of our world, the comfort items which ground him and reassure him, he would be lost in a scary, noisy, smelly uncomfortably bright hell.

It would be like turning up your TV and your stereo in your bedroom up to full volume, leaving the lights on and a box of long-dead sardines under your bed and expecting you to sleep peacefully.

My son can often pass as neurotypical to those who don't recognise his stimming, his expressions, his body language as borderline panic mode.  Those people who don't realise that one tiny little thing can turn that smiling boy into a screaming ball of anxiety in the foetal position.

I know my boy. I can largely predict what will make him anxious, angry or distressed and yes, I do everything I can to help him deal with those emotions. I am acutely aware of small changes in his demeanour which warn of a meltdown or a withdrawal. My life has been taken over by a need to protect him and to help him live the best life he can.

This is not a pity party. I seriously would not change a thing about him. Just like my other children he has an amazing personality, sense of humour, impressive intelligence a unique view of the world and oceans of love to give. I'm just pointing out, like any parent would, that no-one knows my child like I do.

Suggestions on parenting  techniques from people who don't understand are neither helpful or welcome. Indeed so called experts and even those who have children with similar conditions don't always have the right answers for his issues either.

Thankfully most parents of what are often know as SEND children (special educational needs and disabilities) and those who work in that speciality are at least aware of this and when they offer suggestions they generally have some experience behind those ideas. Sometimes the ideas work, sometimes they don't. At least the ideas are offered with an acceptance of ASD in mind.

I get it. It's like many other situations. If you haven't experienced it, or something similar yourself it's very hard to understand.

Living with my son has made me open my mind. I feel ashamed of judgements I have made in the past about children I've seen screaming in the supermarket, behaving badly at soft play, glued to a tablet or phone in a restaurant.

It might be down to lazy/bad parenting but equally it might be down to another issue. The child might look "normal" but not all disabilities are visible obviously.

Which is why I would never have a go at the well meaning folk who seem to doubt my son's diagnosis, who point out aspects of his behaviour as proof he is "normal".

It can be frustrating but I am going to try to just think to myself: "Think yourselves lucky -you have no idea."