Strategy to be organised

In the summer holidays we stayed at Center Parcs and our daughter found the blackboard that they had up in the living area a great way to plan ahead for our day's activities, as she could list them out, rub them off at the end of the day, then start again.  I promised her that I would buy chalkboard paint for her bedroom and this weekend I have painted a big area on one of her walls as a blackboard.  She is over the moon and has already written her activities up for the week and our youngest son has drawn a picture of the two of them.  It is proving to be a big hit and both sons want me to paint an area in their bedrooms now.

My only word of caution if you do this in your own home is that it is a messy job - the paint is quite runny and it took 3 coats to get a blackboard effect.  It is meant to be magnetic, but that aspect of the paint doesn't seem to be working!!  The paint has a strong smell and so we turned this into an adventure by letting the children sleep in a tent in the living room for the weekend. 

Battles of Hair Washing

Our youngest son hates being bathed, let alone having his hair washed.  Now at the age of 5 he will sit in a shallow bath of lukewarm water, as he doesn't like the water temperature to be warm and has recently accepted us using 'Incredible Hulk' body wash on him.  I am forever looking for Superhero branded products to encourage him that he needs to be clean like Iron Man or Batman etc. 

 

Washing his hair is a totally different ball game as he will not let you get his hair wet.  The other day I suggested we use 'Incredible Hulk' body wash on his hair to clean it and before I knew it, he had squeezed a large amount of green body wash onto his hands and put it straight onto his head.  I already knew what was going to happen - series of screaming and tantrums when I had to wash it out.  He protested that I couldn't wash it off and instead wanted me to hold him whilst he laid back in the bath and got his hair wet.  I gave it a go, but once a millimetre of his hair touched the water, he sat bolt upright and was screaming he had to get out the bath as his hair was wet!  It ended up with me getting soaking wet whilst I held onto him and gently poured lukewarm water over the back of head to get as much of the body wash out of his hair as possible.  I've tried using a flannel or a towel against his face so that he can cover it and ensure nothing is splashed on him, but he doesn't like not being able to see and so not knowing when the water is going to touch his head.  He will not tolerate going under the shower and will not lean his head against a basin so that his hair can be washed that way. 

 

Today I went to see our hairdresser who has built up a lovely rapport with our son.  She often cuts hair for ASD children and has a family member herself with ASD, so has a good understanding of autism.  She has suggested to me that on the evening that she works late each week I bring our youngest son in and she will have a go at washing it there.  It may not work, but it's worth a try. 

New Support Group

Yesterday I went to a new support group in Biggleswade, Bedfordshire called The Avenue @TheAvenueASD which has opened for families of children with ASD.  It is held twice a month at the Pentecostal Church, Crab Lane – the first Friday of every month from 9.30 – 11.30am and the third Tuesday of every month from 12.30 – 2.30pm. 

 

It is a group with a difference as children are welcome and if a session falls within a school holiday, it will still be open.  I know as a family we will appreciate this facility as it is often during the holidays that you need extra support.  ASD children can struggle being at home out of their normal routine and so the level of meltdowns can increase and parents need to be able to talk to others that understand.  Plus it will give children the chance to socialise with others, which is a skill they can struggle with and siblings of ASD children will be able to meet other siblings.  There was lots of information available and a small selection of sensory/communication aids to purchase.

Check out their website to get a list of dates the support group is open and other useful information www.theavenuesupport.co.uk

Words of Kindness

I’m already on a high today from managing to half jog/half walk 2.4 mile loop with a friend this morning after dropping the kids to school.  It’s quite an accomplishment for me.  On my way home, I passed some neighbours who we see from time to time and they told me what a wonderful job I’m doing with our children.  It has made my day, as some days can be a real struggle when you have children with ASD.

They have seen me at my worst in years gone by with our daughter screaming as a toddler and having massive tantrums outside their house as she didn’t want to go to nursery.  On one occasion it took 30 minutes for me to convince her with the help of our neighbour who very kindly gave her a soft toy as a distraction.  Since then, they have seen me with our youngest son climbing out of his pushchair as a toddler then having to carry him as he refused to walk, as well as push the pushchair and get my other two children to school.  They’ve seen him when he’s suffering with hypersensitivity to clothes and he’s pulling off his clothes as fast as I’m trying to keep them on him.  They’ve never said anything other than to offer their help.

Today they remarked how grown up the children seem to be getting and although I may look like a pack horse carrying all their things to school each morning, it looks a lot less stressful than a couple of years ago, before I had all the knowledge that I now have of ASD and the support network around me.

Those few words have really lifted me and sometimes it is just a small act of kindness like that, which will transform your day and make you realise you are doing a good job after all.

Proud Mummy Moment

In the summer holidays, I wrote about the difficulty our daughter has with understanding that her bed needs to be changed regularly and when I do it, a meltdown normally follows which can last hours.  Something that should be a simple task becomes a huge drama.  Generally, this is because in her eyes the cushions and soft toys are not placed back on the bed to the exact millimetre. 

 

We have had a breakthrough this week and she changed her bed while I was out walking with a friend.  She was so excited to show me when I returned home that she had put on a new sheet, quilt cover and pillow case on her bed all by herself.  I was so proud of her and gave her 2 wows for her wow chart, as this is a big accomplishment for her.

 

It may seem such a small thing, but after months of tears and tantrums about doing this weekly chore, it is a huge step forward.  It shows that the need for routine, structure, persistence and determination that a parent of a child with ASD must have, has finally paid off.  It may only work for this task at the moment, but it is a start and perhaps at the age of 10, our daughter is beginning to realise that by using her energy for taking responsibility for things like this will give her more time for doing fun activities.  It also means I do not have to wait for the explosion that I know will follow when she returns from school and discovers I have changed her bed.  Fingers crossed this will now become a regular occurrence and our home will be less noisier once a week - although now she has started to learn the pbone (plastic trombone) at school, I don't think we will ever have a quiet home again!!

Struggles of Illness

Our youngest son has been poorly this week after having an asthma attack whilst waiting to be seen at the doctors. We were in the right place at the right time and he was quickly put on a nebuliser and his breathing stabilised. He has been given steroids in the form of 4 soluble tablets a day to be dissolved in a drink. I explained to the doctor that this could be tricky as he only drinks water or milk and he does not like different tastes and he will know it is not normal water.  His sensory processing difficulties mean that he is very sensitive to all of his senses and has a very limited range of tastes that he will tolerate.  It was explained how necessary it was that we got our son to take these tablets or he could end up in hospital, so we put on our thinking caps as to how we were going to achieve this. After an hour of him crying as he didn’t like the taste, I rang my mum and put her on speakerphone.  She told our son that she had a magic telescope and could see the special drink he had to take to make him better. He kept looking to see where the telescope was through the phone but drank the medicine at the same time. It took 20 minutes of constant chat and encouragement but he drank it and was a different child within an hour of the medicine kicking in. He has to take it for 5 days and so far he is playing ball as he knows Nanny can see him with her magic telescope, plus he’s earning a ‘wow’ on his ‘wow chart’ for every dose he takes.  Nanny has also promised him a toy when she sees him next week as an extra incentive.  Without this, he would refuse to take the medicine once he feels better in himself, as in his eyes if he feels better there is no need to continue.

From our experience, ASD children see things in the here and now, and so struggle to understand the consequences of what would happen if they stop taking medicine midway through a course they have been prescribed.  Our daughter went through this earlier in the year and the only way we could get her to take her antibiotics was to take her to the doctors and she sat in the room until she had taken her medicine.  We have a very understanding GP!

Sensory Bag and Sensory Tray

    

Both of our ASD children have had a private Occupational Therapy assessment and from this we have discovered that they have lots of sensory processing difficulties.  Unfortunately, we are unable to access OT support on the NHS in Bedfordshire, so we pay for this service, but we have found it to be one of the most beneficial things we have done to help our children cope with their ASD. 
 

Our house is now a sensory playground with an assortment of toys from a rocking moon, spinning egg shaped chair, different textured mats to jump on, gym ball to smaller fidget toys.

I’m always looking for new ideas and this week whilst searching on the internet I found someone had made a sensory bag.  It’s a simple thing to make which our youngest son has now described as his ‘calm bag’ to use when he’s angry.  Fill a zip lock freezer bag with shaving foam and put gaffer tape across the top to ensure little hands do not open it and cover the floor in a mess!  If you have a child who does not like touching different textures, this will be a way to introduce them to a slimy surface as they can feel it through the bag without getting any shaving foam on them.  Our youngest son has been squeezing the bag and using it to keep calm when he says ‘his brain is angry’.  To be more creative, you can add food colouring to it.  I put red in one bag and our daughter said it looked like blood and could have been something from Horrible Histories, one of her favourite tv programmes.

Another creation I have made this weekend is a sensory tray from a large foil cooking tray, which I filled with coffee granules to give the effect of dirt.  I added a truck, skateboard, a selection of small mosaic tiles, lollipop sticks and a spoon.  Our youngest son has had great fun filling the truck with coffee, then emptying it out again, drawing patterns in the coffee with a lollipop sticks and banging it on the foil tray to create different sounds.  He has enjoyed lining up the tiles in the coffee.  Even our daughter who is 10 has been drawn to it and has been playing with the coffee granules when she thinks no one is watching.  Children with ASD like repetitive actions and can find this calming.  Plus the aroma of coffee is stimulating for the sense of smell and playing with the different objects may help with imaginary play.

 

Both of these ideas are cheap to make – I’ve used shop brand shaving foam and coffee granules and the truck, mosaic tiles etc are all things we already had at home.  I think I have had as much fun creating these as the children have had with playing with them and I'm sure I'll soon be coming up with new versions.