May the 4th be with you

Today is one of Benjamin’s favourite days of the year, Star Wars day at Legoland.

For his 16th birthday I gave him a Commander Cody outfit and he wears it whenever he gets a chance, which is not often enough for him. He has an impressive Star Wars lego collection and still loves to build new vehicles. He knows all the characters and this Star Wars day is his opportunity to dress up and talk to the actors parading around. In recent years, he has become a star attraction himself as all the little children want their photo taken with him so we trail around after him while he gets his moment of glory and adulation.

A friend once remarked how our children will be more accepted as adults than they are as children, particularly as teenagers. It really isn’t cool as a teen to know every character and to still play with lego and to want to dress up in star wars outfits. But, suddenly, you become an adult and find that there are other adults who do share your obsessions and you find kinship.P1010187

We were amazed one year when we took the boys to a lego builders show in Swindon that there were so many adult lego designers and collectors. There are even clubs and magazines so we know he will find like minded people as an adult that he couldn’t find as a child.

He is passionate about many other things including trains. When the boys were young, we had about 6 different types of train sets including Brio and Tomy which of course had the beloved Thomas the Tank engine sets. We still have a huge collection of them. Again, many young children love to play with trains but most of them grow out of it including our other sons. Not Benjamin, he still loved them. So we started collecting Hornby for him as it was more age appropriate. He still doesn’t have any friends who want to come and play trains with him but hopefully as an adult, he will find like minded train enthusiasts. He was delighted when we moved house to find that our next door neighbour had Hornby trains in his loft room. He also loves to ride on steam trains and seeks them out whenever we holiday in England.

These hobbies as a teenager have been isolating for him as they have labelled him as ‘different’ but actually, he isn’t different at all now that he is an adult.

We worry about our children growing up with autism and not fitting into mainstream society but when they reach adulthood, a whole new world seems to be waiting for them, one which does accept their differences.

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Life skills

I still remember when my boys were all tiny teaching them basic life skills before we even knew they had autism.  This meant skills like learning to feed themselves. How much easier it was spooning food into their open, bird- like mouths (in our case with twins, the method was one bowl and one spoon to share, spooning into alternate mouths). But they had to acquire the ability to feed themselves which meant months of mess, covering themselves and everything around them in pureed gloop.

Then there was the potty training. Enough said about a year of accidents and poo smearing but again it had to be done if they were to get out of nappies.

For all children, whether they have autism or not, learning new skills can be hard. Hard for the parents that is. You have to go through the process however painful but it’s always worth it in the end and from then onwards life is easier. So short term pain for long term gain.

With autism though, everything is that much harder to teach and it is that much harder for our children to acquire certain life skills. Sometimes they surprise you, one of my twins was potty trained in three days, the other took a year. But many skills you thought might not be achieveable in the early days, usually turn out to be possible. They might just take longer or be acquired at a later age but with determination and perseverance they do finally happen.

Learning to communicate, ideally using language is one of the hardest life skills for most of our children and the one that children without autism acquire seamlesssly without any input. For our children with autism, acquiring speech can be a lifelong learning process.

This week, my 18 year olds have gone on a school trip away. In previous years, I have packed for them but this year, it was time they did it themselves. Armed with a list of what they needed to pack, I left them to it. Like all these skills, it’s so much easier just to do it for them. Endless questions and parading of clothes , each item questioned before being packed and I started to wish I had done it for them. It would have taken me 10 mins but instead the process took hours and tested my patience.

I need to increase their life skills and remember that it is always short term pain for long term gain but sometimes I just don’t have the energy for the short term pain. So, I have found some after school carers to teach them some life skills, particularly cooking which is really not something I enjoy doing, so talking through every step of a recipe I will leave to someone else.

Teaching independence is a huge challenge and judging when they are ready for each new step needs to be carefully managed as failure can take us all backwards. It’s hard too to explain to the older boys why their younger brother is allowed more independence than they are and why he has learnt certain life skills before they have. We are a long way still from independent living and we still don’t know if it will ever be possible for the boys to live independently but I need to push their life skills and stop taking the easy way out by doing it all for them myself.

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It takes a village to raise a child

How many people does it take to raise a child with autism? And even more importantly, how much extra emotional and physical toll is there on parents bringing up a child with autism?

We have needed an army to help support our boys, we haven’t always had one though.

The ideal army would consist of a loving family and extended family , supportive neighbours, committed teachers and well equipped and knowledgeable schools, kind babysitters and carers plus a team of professionals – doctors and paediatricians with knowledge of autism and the medical problems that often co exist, speech and language therapists, occupational therapists and physiotherapists.

That is just for starters, many of our children also require nutritionists, holistic practioners (in the absence of much support from the medical profession), psychotherapists, play therapists, music therapists. My boys all had specialist early intervention in the form of VB (a form of ABA – Applied Behavioural Analysis) for 35 hours a week which required trained 1:1 tutors, a supervisor and a consultant.

Only the minimum is provided by the education system and the NHS and even then many parents have to fight to get what their children need. We had three special educational needs tribunals to get what we felt our boys needed at great cost to us both emotionally and financially.

There are many agencies involved in our children’s care like the education system in which there are SENCOs , Educational psychologists  and Learning support assistants.

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Social services provide social workers, portage and home workers and hopefully some direct payments to fund respite care and carers.

The list goes on and on and if funds were unlimited , think how many more people could be involved.  Thankfully, some charities exist who provide support and specialist days out in holidays .

But at the heart of all this , is the family co ordinating this team and providing the nurturing, loving environment which our children need.  A child needs to feel secure and loved for any healing to be possible and to establish trust so that others can be allowed to help them.

The greatest strain falls on the parents who love their children unconditionally. We all do anything we can to help our children which may mean abandoning our own lives to enable them to reach their full potential whatever that is. In doing so, we regularly struggle as the ‘village’ we need to support us in this, is often missing for many reasons and so we have to become that ‘village’.  Looking after our children  can mean social isolation, physical exhaustion, extreme stress and sometimes, we cope and sometimes, we don’t and when we don’t , we need that elusive ‘village’ even more.

 

 

Successful holidays

We have just arrived home from a successful week’s holiday, sticking to a very tried and tested formula; one we have learned after years and years of practice.

Routine and familiarity are words that every autism parent knows. When our boys were very young, we often visited the same destinations and before they were able to talk, they would recognise a stop on the journey and know where we were headed. They would be happy so we were happy but after a while, we knew we needed to stretch their comfort zones and become a bit more adventurous.

This didn’t mean travel like I once knew it; as a backpacker in my 20’s, I travelled the world deciding on a whim which country to visit next. Those days are gone, but even now I long for a little bit of adventure. So, slowly over the years with compromise and patience we have expanded the holidays we can now manage.

Years later, we still try to stick to some basic rules.

Firstly, that the journey is no longer than a 4 hr drive in total so it can be broken up with one stop. Today we stopped at a castle for a picnic and a walk, so much nicer than a service station but not always possible. Any longer than 2 hrs in a car and the in-car fighting becomes intolerable due to boredom.

Secondly, we only ever rent a holiday house. Never a holiday home swap, the thought of my boys combined with other people’s precious possessions would not make for a stress free holiday. I also try to pick a house literally in the middle of nowhere, this week we were in a holiday house on a farm surrounded by fields. After the sensory overload of visiting new places, returning each day to somewhere quiet and calm soothes us all.

No hotels, as we need to have the boys safely locked in at night and be able to hear them and know where they are. We do now go to a family activities resort hotel each year in Europe but we stay in the equivalent of a small flat on the site or adjoining bedrooms with the door left open in between.

This week I took a Harry Potter box set so we could watch all the films – we only got half way through, but we also take favourite films as that helps with routine. I have taken the boys own quilt covers too in the past, even if sheets are provided; and of course a car full of lego, train sets and whatever they were into at the time.

Holidays are about learning to cope with change and having new experiences but most importantly they are family time when we are all together and have time just to spend with the boys.

They are also about creating memories. Our boys’ recall can be phenomenal and they remember so many details of past holidays and places we visited. I get to take photos all week of all the boys together when they are relaxed.   Some of these photos are among our most treasured and will go onto the individual photo calendars which I make each boy every Christmas.

I try to plan a visit every day;this week has been full of castles, canals, beaches and cities. The more we try to stretch their boundaries, the easier it becomes. I am still dreaming of the day we can take them to Europe and do some sight seeing but until they can all stop arguing and fighting with each other when we are out, we need to stick to quieter destinations.

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