Thursday, 26 September 2013

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!

Saturday, 21 September 2013

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.

Wednesday, 18 September 2013

The Value of Supporting One Another

I attended a parenting course almost 2 years ago and through this I have made a solid network of friends who all experience the rollercoaster world of living with ASD and the affects it has on everyday life. We try and meet up regularly for a chat and it is reassuring to know you aren't alone. We had a catch up today and as well as talking about the challenges our children are currently facing, we have a giggle and enjoy each other’s company. It is a positive experience and we always go away with a smile on our face.

As I walked home today from seeing everyone, I remembered an exercise we had to do on the parenting course.  Everyone was asked to write anonymously on a piece of paper one thing that you admired about the other attendees.  I still have my pieces of paper as they are all inspiring comments and if I'm having a tough day, I can look at them and realise I do possess the skills to face anything that life throws my way.  Sometimes it is easy to forget this when you are dealing with another meltdown or you have been awake half the night with your child. 
If you have a child with special needs I would recommend going to a parent support group as you will be with people who understand what you are going through each day, you can share tips and you won’t feel the need to apologise for your child’s behaviour as you are with people who appreciate the challenges you face. 
As a parent of two children with ASD, I have experienced many comments from strangers in the street saying how badly behaved my children are.  If only they understood that my children process the world in a different way and what they perceive as bad behaviour is instead how my children are making sense of the world around them.  I have learnt to ignore these comments, but it has taken time and has been easier to do by having a network of friends who understand.

Sunday, 15 September 2013

Starlight Hike

A couple of friends and I took part in the 10k Starlight Hike at Moggerhanger Park last night. We have been walking for a couple of months now and have built up to 6 miles per evening three times a week, so we were prepared for the walk.
The day didn't get off to a great start for me as our youngest son woke up at 4am screaming, as he had convinced himself there were black spiders everywhere in the house.  It took a couple of hours to calm him down by applying deep pressure (he likes bear hugs, weighted blanket round him etc), which help with his sensory needs.   I thought calm had been restored when our daughter suddenly woke up in a bad mood which quickly escalated into a full scale meltdown – doors were slammed followed by screaming and shouting that lasted another couple of hours. By mid morning I felt as if I had been awake half the day and was ready for a snooze.  I had no idea how I was going to make it until night time, as the walk didn't begin until 10pm.

I hadn’t bargained for the rush of adrenalin that took over once we arrived at Moggerhanger Park and registered our places. We got into the mood of the night and bought ourselves blue head boppers that glowed in the dark. At the start of the walk there was a sea of blue lights bouncing along the road. We were entertained on the walk by majorettes,  musicians and a bubble machine blowing pink bubbles into the sky. As we approached the finish line we walked through a pretty forest area which had been decorated in tiny lights - it felt like a magical walk in fairyland. 
We are already planning to do next year’s walk – I’m finding that my walks are a great way to release stress and have some time for me.  I can have an adult conversation without our youngest son's latest habit of copying every word you say – this has developed since returning to school.    
Walking may not be for you, but find something that you can do to escape from the pressures of everyday life.  No matter what demands are put upon us, we are all entitled to some 'me time', even if it is only for 10 minutes a day.  By calming ourselves, we will be better equipped to deal with whatever life throws our way.


Monday, 9 September 2013

Wow Chart

I am always looking for new ideas of how to help our children cope with their ASD and the challenging behaviour it often presents. It is common for ASD children to have low self esteem and it can be hard to boost. I have come across a strategy of highlighting a child's achievements for the week - a ‘Wow Chart’.  I have been trialling it on all 3 kids for the past week and so far it has been a huge success. They each have their own Wow Chart (have attached an example below) and different achievements are noted during the week.  This can be simple things that are causing a problem for them like using cutlery for dinner each day, being ready to leave on time for school each morning to an accomplishment at school.  Yesterday I tried to use it to encourage our youngest son to go on the rugby pitch for his second training session.  He joined in 3 short activities and spent no more than 5 minutes out of 2 hours on the pitch, but for every time he joined in, I awarded him a ‘Wow’.  It’s only a small step, but if it helps to boost his confidence and make him realise that he is as able as everyone else around him, it will do wonders for his self esteem.
Once the kids have 4 Wows they are able to choose a treat from an old sweet jar we have at home.  The treats range from bargains that I have found in Poundland, to cards that have rewards written on them e.g. 20 minutes to play on the iPad, watch a DVD of their choice at the weekend, stay up 30 minutes later on a Friday night.  I may have to raise the bar and increase the number of Wows they need to earn a treat as they all got a reward within a couple of days!!  Although it’s not a bad thing to make the initial treat happen quickly, as it keeps them motivated. 
Our daughter has already developed her own plan where she wants to save up her Wows, so instead of getting a treat after 4, she goes for 12 and then gets the next Horrible Histories comic that is due out in the shops next week. 

Wow Chart

Earn 4 wows and you can choose a reward from the jar

Tidied room with no fuss!!
Went back to school on first day with no fuss!!
Chosen as form book monitor at school
Helped brother

Thursday, 5 September 2013

First Day Back at School

It seems like only yesterday the kids were packing up from school and now the summer holidays have come and gone and it’s time for them to start a new year. 
Our 3 kids all went back yesterday and it was greeted with mixed emotions like you expect for any child.  Our daughter had tummy ache all Tuesday night and couldn’t sleep due to stressing about moving up to Year 6, having new teachers, being in a different form room with a new form tutor. 
Our eldest son told me in the morning to wake him up ‘tomorrow’ as he needed another day in bed!! 
We had prepared our youngest son with a countdown chart of how many sleeps until he returned to school, but he has been telling us this week that he has to stay in Reception Year as he has not grown enough to be in Year 1.  He has not been looking forward to a change in classroom, teacher and after being in one big classroom with 60 children in Reception, the year group has now been split into 2 classes, with three of his five friends being in the other class.  It’s a big change for any 5 year old, but we know it will take him longer to adapt than most children in his class. All through the holidays we have been looking at photos of his new classroom and teacher to help familiarise him with the change in his school routine.
So far it seems fairly quiet in our house after the initial day back at school.  It normally takes a week or so for the reality to kick in that this is now the new daily routine and then the meltdowns will occur, as homework will need to be done, we need to be out the door on time each day to get to school, need to wear uniform etc.  Our youngest son has already opted for non school uniform shorts today, which is a sign he is anxious.  He has also taken 2 soft toys to school with him to cuddle and stroke – this is a calming tool for him.  During the holidays he has developed a habit of clicking with his tongue when he is anxious.  He whispered to me last night that he did click at school, but did it quietly so no one heard him.
It will probably take me a couple of weeks to get back into the routine of having the kids back at school as well.  My to do list is huge as the holidays always pose a problem for our 2 ASD children, as unless they have organised activities in place, they struggle to do things on their own and want me to be at their side all the time.  Our dining table is covered in paperwork, books on ASD to read, as I’m always looking for new ideas to help our kids and craft projects for me to do - I try and convince myself that I am entitled to the odd moment of relaxation!!  Before long we will all be back into the swing of school life, including the meltdowns – it’s part and parcel of family life with ASD, but I wouldn’t change our family for anything.

Tuesday, 3 September 2013

Understanding my ASD Children

Last night saw me return to my Zumba class after a month break for the summer holidays. My head and feet were all over the place trying to remember the routines again!!  Our teacher tends to do different dances each week to mix it up but after a month away it felt like I was a beginner again. I’m far from the best at coordination, but generally I can do the moves in my own way!  Last night I kept getting the steps wrong and was frustrated with myself.
Whilst dancing I had a light bulb moment  - this could be how my 2 ASD children feel when they are doing simple tasks whether it’s learning to make a bed or remembering they have everything for school. I'm always giving constant reminders - verbally or visually to help them and have to do it week in week out as certain things don't seem to sink in. I consider myself to be patient, but last night made me realise that everyone needs to be more understanding with people with ASD.  I know by next week I will get back into the swing of Zumba again. Unfortunately my children may need me to repeat instructions or show them how to do things for weeks, months or years.  It’s not their fault, just their brain processing things in a different way. Both our ASD children have an excellent long term memory for detail and our daughter seems to be fortunate to have a photographic memory. If you ask either of them what I just said, they will have no idea or if I tell them to brush their teeth I guarantee it won't be done until I've asked several times then taken them into the bathroom and shown them their toothbrush. All they hear is ‘teeth’ and have no idea what they are meant to do with them.
This has been a reality check and made me appreciate how much effort our ASD children must go through each day to complete simple things that the majority of us take for granted. This week will be a challenge for them both with the return to school tomorrow, but my visual and verbal aids are at the ready.

Sunday, 1 September 2013

First Session of Rugby

Our eldest son has played rugby for the past 3 years and he dreams of playing for Wales and the British Lions.
Today our youngest son had his first taste of a rugby training session.  He has watched his brother play many times, but if it’s cold or wet he does not like to be outside.  In the past I have carried him, sat on a chair with him to shield him from the elements or stayed at home to save him the stress of being on the side of the pitch. 
It looked as if this morning would be the perfect start to his rugby career with glorious sunshine, one of his friends from school coming to try rugby for the first time and the coach for today was a familiar face.  How wrong could we be?!  I now have a bad back from carrying him for most of the two hour session, as he didn’t want to stand on the grass, kept saying he was cold and once he realised he was going to have to shout ‘TAG’ when he took a tag from another player, he quickly told me ‘I’m not talking’ and he was distressed by the other parents watching from the sidelines.  He hates attention being focussed on him and although there were only 13 or so kids for his age group and so not that many parents, he found it all a bit too daunting.  Since we have come home he has not stopped bundling his brother and sister to the ground and shouting at the top of his voice!
Rugby could be an ideal sport for him as it will help with his core stability and teach him how to play as part of a team.  A lot of people with ASD prefer to do things by themselves, so it would be wonderful if we could engage him at a young age in a team sport. 
It’s unfortunate that his selective mutism as well as his ASD has held him back today from participating, but it is just a setback.  We will persevere and continue to take him to the rugby training sessions each week, as he may become more comfortable as the other players and their families become familiar faces.   If he decides after a few weeks of going that this isn’t the activity for him, we can try something else.  The important thing is that he gives it a go and doesn’t give up at the first hurdle.

Family Holiday

Center Parcs is a magical place – as a family we have been there 3 times and each visit gets better as our children grow older and can join in more activities. 

We have just spent 5 days on the site at Elvedon Forest.  The structured routine of activities throughout the day, tranquillity of the surroundings and the variety of wildlife that can be spotted there have suited our family dynamics.  Our youngest son has been enamoured with the ducks, squirrels and rabbits that visited the patio door of our lodge.  He took a soft toy squirrel with him on holiday and whilst away he bought a soft toy duck.  He was content to sit on the floor by the patio door with his soft toys showing them to the real wildlife outside.

Our days were long and busy as we made the most of the facilities available.  It’s not often you can try out so many activities in once place.  We ensured that all 3 children did their own activities so that they all had some quality time e.g. our youngest son went on a pony ride and tried fencing with foam swords.  Our oldest son went quad biking and street boarding and our daughter decorated cupcakes and did wall climbing.  As a family we played badminton, went on a pedalo, painted pottery and used the swimming facilities.  Our oldest two children love the thrill of the water rides and were in their element going on the rocky rapids, tropical cyclone and having a go at aqua jetting.  I’m not brave enough for this, so preferred sitting in the lagoon cave with our youngest son, who is not a big fan of water and hates to be splashed/get wet!  He was happy in the lagoon cave and it was a sensory paradise with dimmed lighting, shallow water so no one could jump in or splash him, quiet area away from the noise of the rides. 

The lodge had a blackboard on a wall in the dining area.  Our daughter spent time every night writing our timetable of activities for the next day.  Her ASD does not allow her to be flexible and she likes to have a firm routine each day, so this was ideal for her.  We’ve tried whiteboards at home, but she gets bored of them after awhile.  Once she’s back at school, I am going to look for some blackboard paint to cover one of her bedroom walls with, so she can write her routine up each day.  It may stop her getting stressed that she has forgotten something for school or not done her homework on time.

Restaurants at Center Parcs cover a variety of taste buds and each one has their own play area, which was ideal as the kids could run off steam whilst we were waiting for the meals.  The staff were very good at catering for our youngest son’s limited diet and put different foods in separate containers as he doesn’t like them touching on a plate. 

The biggest problem our youngest son came across on holiday was too much noise and he forever wanted me to cover his ears, especially when people put their hands under the dryers in the toilets.  If we were sitting down and he was distressed by noise, we made sure we had a pair of headphones with us that could be plugged into our phones and he was able to watch a film.  This helped to calm him, but I am now going to buy him a pair of ear defenders that he can wear to block out noise wherever he is. 

Now the fun is over, we need to start saving again as the kids have already asked to go back next year!