Environment – Have a look at the home environment.  Is there anything you can do to make the rooms your child uses less stimulating?  Cut down on clutter.  Are there places that your child regularly has a ‘meltdown’ – get down to their height and see how the world looks to them – is there anything obvious that might be ‘jarring’ their senses? 

Are there any things causing continual stress – for example, I have always had problems with Archie and Televisions, DVD’s, videos.  He just won’t leave them alone and breaks something electrical at least once every six weeks!  In the early days, each day was descending into a constant battle to keep Archie away from switching the TV on - where nobody won and we were all stressed.  Give yourself a break and move the TV out of reach or put it in a cupboard you can secure – you can revisit behaviour and training later – right now, just get life as straightforward as possible, because you need your energy for other things. 

Is the house ‘safe’ for an ASD child – children with ASD’s often have absolutely no sense of danger and often can be very physical active, even hyperactive – Archie gets himself into perilous situations frequently.  If I take my eye off him for a second he’s climbed somewhere and fallen off, or pulled a TV on top of himself (3 times before I found a way to secure it) – I had a real problem because he could climb baby gates and he used to get into the kitchen and try to walk over the kitchen surfaces, including the hob (I had frequent nightmares about what would happen one day if it was on!) in his search for biscuits. – I didn’t realise that Lindam make higher level gates – designed so dogs can’t jump over them.  You can’t watch your child every second of every day, forever.  Get the equipment you need to make the house safe - so you can at least go to the loo from time to time!

Communication help – Archie’s meltdowns reduced considerably once we introduced PECS – it meant he could request a biscuit, rather than waiting for me to move away so he could jump the baby gate!  If you have a digital camera, a computer, a printer, preferably a laminator (all available pretty cheaply in supermarkets now) and some Velcro dots, you’re off! 

Take pictures of food and drink items, print onto card and laminate – stick Velcro dots on the back (fluffy ones on the pictures and hookie ones on the board because they are easier to clean!).  It’s great if you have early access to the help of a Speech & Language Therapist or Portage worker, but this is something you can do yourself quite easily if you buy/borrow a book about PECS. 

To begin with you need two people and a very favourite treat in small pieces (chocolate buttons broken into four pieces are perfect!).  Sit, ‘person 1’ behind the child (someone the child doesn’t mind touching them is best) and ‘person 2’ opposite – preferably across a small table. Put one chocolate button on the table in front of person 2 and in the child’s view, but slightly out of the child’s reach. – Person 1, behind the child puts the ‘chocolate button’ PECS card on the table in front of the child and waits for them to grab for the choc button, catches their hand, puts the PECS card for the chocolate button in their hand and help them hand it to person 2.  Person 2 takes the card and says ‘you want a chocolate button?’ and gives them the chocolate button.  This feels a real mess to begin with because you’re all falling over yourselves to catch arms, remember what to say and when to give.  You soon get into a rhythm, and where tasty treats are concerned, the motivation is there to learn quickly.

The main point is to have something the child is very motivated by (hence chocolate in our case) and to catch their arm as THEY reach for it.  You are using the power of their motivation to help them learn, so try to use something really nice to start with, regardless of the health implications – as soon as the child is fluent with the exchange you can start to swap for healthier items. 

Once the child has mastered one item, attach it to a board or folder, and over time move the folder further away until it is finally hanging where you want to keep it (ours is next to the kitchen door because he is most likely to move towards the kitchen when he wants a snack).  Then, over time you can add more snacks and drinks.  Don’t overdo it.  Keep the choices simple.  There are some books recommended in the book reviews that can help you with PECS – once you are working with a speech therapist or Portage, they will also help you to improve and expand.

If  PECS doesn’t work out for your child (and it doesn’t for everyone), you can also look into Makaton – ‘something special’ on the CBeebies channel and website has signing – there are lots of internet sites with free resources and books with commonly used signs.  Some children pick up signing better than, or as well as, PECS.  We use signs to help Archie understand what we are saying but he has never signed himself – for this reason we concentrated mainly on PECS, and use Makaton for things like ‘more’, ‘stop’, waiting’ and other words or requests that PECS cards are not convenient for.  As with everything, these are only tips – what works for your child will be a unique mix that suits your child and your family.

Sensory – watch your child – look for things like tensing, grimacing, jumping or walking on toes, pacing, meltdowns, what they like to touch, what they don’t like to touch, what they touch with their hands (or feet) and what they don’t.  Over time you will be building a picture of their sensory preferences, and maybe getting clues about the things that drive them crazy!  If your child has a meltdown, think about what happened before and what happened after.  There might turn out to be very common similarities about what is upsetting them, or what you do afterwards – if you always put them in ‘time out’, maybe they are using meltdowns as a way to get away from overstimulation?  If you can afford to buy books I would really recommend the ‘Out-of-Synch Child’ (see book reviews), it helped me make sense really quickly and my ‘meltdown management’ became much better as a direct result.  Your local library would be happy to order a copy in if you don’t wish to buy a copy.

Diaries – keep diaries or records of everything you can.  Food eaten, behaviour, sleep, meltdowns, interesting observations, things they like, things they don’t.   Over the first few months I had many ‘eureka’ moments where I realised lots of the behaviours I was struggling with on a daily basis could be solved relatively easily because certain foods made him hyperactive or gave him tummy ache, certain sounds drove him crazy, he needed to sit on the same step of the stairs to put his shoes on before he left the house – if anyone criticises that you are ‘pandering’, just let it go – what is important is for you to get the rhythm of family life on an even keel – you can work on increasing your child’s tolerance, or behaviour management strategies later.  The more you can see, the more you can work out.  The information also comes in really useful for your DLA application, for appointments with Paediatricians, speech therapists, and other professionals as they follow on.  Diaries may also help you to reassure yourself that your child IS different, and IS harder to look after than other children of the same age.  I spent too much time doubting my own instincts or not knowing how to put my concerns into words, but keeping scribbled observations helped me feel stronger about asking for appointments and referrals.

Play – it can be really difficult to engage in any type of play with an ASD child.  Archie was really resistant to being led in any way by an adult.  Many ASD kids get fixed into one type of solo activity that it is difficult to coax them out of.  With him I had to get to know what he really liked and then give him opportunities to do that while I joined in alongside in a non-directive way.  I went to the ‘pound shop’ and got two sets of identical sand toys I thought he’d like.  I let him play with one set in the sandpit while I came alongside and played, quietly at first, with another next to him.  After a while he came to accept this and started to take interest in how I played.  Then I started to pour sand into his sand toy, and then over time we were able to both use the same toy without it upsetting him. 

I used the words ‘ready, steady, ……go!’ with lots of different toys and situations – like tickles or chase.  He likes it I think, because it gives him warning that something is going to happen.  Over time I started to say ‘ready, steady…..’ and then wait – if he looked towards me or held his hand out or made any gesture or sound, I would say ‘Go!’ and carry on.  He liked this straight away – now he knew something was going to happen and he had the power to control when!  After a while, I held out and only responded to eye contact.  This simple structure for games made a huge difference in his eye contact in a very short time, and soon he started to make sounds too.  In time, this has developed and now if I say ‘ready…’ I have his attention straight away, he will say ‘eddy’ to get me to continue – it’s one of very few recognisable sounds he has so far.

We will be adding some ‘play ideas’ downloads to the website soon, so keep us on your favourites and check back

Request and chase appointments.  Be proactive – ask for appointments and then put notes in your diary to follow up with calls if you do not receive an appointment notification within a few weeks, chase it up.  Don’t expect to be given appointments with Speech and Language Therapists or Occupational Therapists automatically.  Better to request early on.  Also find out if Portage work in your area and get on the waiting list.  If you could do with some general help, check and see if ‘Homestart’ are in your area – they give help to new mums and also to families with children who have special needs.

Read about the types of therapies available and get onto waiting lists.  Some therapies have waiting lists that are years long.  You shouldn’t be charged for making initial enquiries and entering a waiting list, and you can always decline at a later stage if you find your child’s needs aren’t compatible with the type of therapy.  Better than deciding that, for example, ABA is the thing for you and then having to wait two years before you can get on with it.

Send off for information packs – get onto websites and look up charities and agencies that can help you and request any information packs you can get hold of.   I found the government initiative www.earlysupport.gov.uk   Early Support Family Pack and additional booklets were really useful for identifying what services and support were available.  I think you can order the pack direct from the DFES website, or go through this site – it’s changed a bit since I did it.

You can also consider basic dietary changes – there’s more information about this on another page on this site.

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