A simple task turns into a huge drama!

Changing a bed should be a simple task that takes minutes to do each week. This week it took over 12 hours to do our daughter’s bed and she was still not happy.

As well as having Aspergers and challenging behaviour, our daughter has Oppositional Defiant Disorder (ODD), which can cause real problems when we ask her to do something that she does not want to do.  On her bed she has an assortment of cushions and soft toys positioned in a certain way so that when I change the bed a huge tantrum generally follows.  To placate the situation I've tried taking photos on my phone of the cushions and soft toys so I can put them back in the right place.  However, as soon as she walks into her room she will know if one of them is a centimetre out of place. I have suggested that she changes her bed to ensure it is done to her specification but this has been met with a lot of opposition – part of her ODD means that she digs her heels in a whole lot more forcefully than most children would.

This week I decided to remove the bedding and told our daughter that she needed to put on a new sheet, pillow case and quilt cover. This was met with a session of screaming which continued on and off during the day whenever she set foot in her bedroom and realised I wasn't going to do it. She refused to go to bed but by 11pm gave in and put the sheet and pillowcase on with me giving verbal instructions on how to do it. I then helped her to put on her quilt cover. Finally I thought we had made a breakthrough but she still wouldn't sleep in the bed without her toys and cushions being in the right place and wanted me to do them. As this is what generally causes the biggest upset about changing her bed, I told her to put them back on her bed or sleep in the bed as it was that night. This was met with stamping of the feet like a toddler in a rage. She stormed into our bedroom took off our quilt, placed it on the floor in our doorway and spent the next few hours asleep there.  We didn’t react to this in anyway and when she woke up in the early hours, she put everything back on her bed and went to sleep there. 

Gradually it may sink in that she has to take responsibility for tasks and they can take minutes to do if she does them without putting up a fight.  The ODD means it is hard for her to accept things easily, but in time she should understand that she will have more time for the fun things in life, if she doesn’t use all her energy to oppose things.  

As parents of an intelligent girl, we sometimes forget that she needs more explanation than others to do tasks due to her Aspergers.  If it was our youngest son, we would give him visual aids to show him what to do, but at 10 years old, our daughter feels she is too old for this.  Sometimes a simple verbal instruction is all she needs, once she has decided to stop opposing us!

Trip to the beach - sensory nightmare!!

Going to the beach conjures up an image of laughing children having fun paddling in the sea, building sandcastles, enjoying ice cream, hunting for special pebbles and shells etc.  For our youngest son it is a sensory nightmare.   

We visited Broadstairs last week and walking to the beach we found a shop that sold buckets and spades and told our 3 kids to choose one each to use on the beach. This started the first of many meltdowns of the day. Our youngest son kept shouting that the spades weren't the right shape. They looked normal seaside spade shapes to us and we couldn't work out what he was referring to. After a session of feet stamping inside the shop we bought them all a bucket and spade.  Before we reached the beach, we had to pass an ice-cream shop.  I had made the mistake earlier saying that we would have ice-cream at the beach and our 2 ASD children took me to my word and wanted it there and then. They are very literal and weren't prepared to wait.  As we walked down the steps onto the beach the kids noticed the swooping sea gulls and the screaming began. They were scared they would snatch their ice-creams.  I made another error and said seagulls don’t like ice-cream, they prefer chips instead.  This had knock on effect later in the day as our daughter and youngest son refused to have fish and chips on the sea front as I had said seagulls like chips! Literal interpretation can be the bane of our lives.  

When our youngest son’s foot touched the sand, he refused to move until he had emptied the sand from his crocs. He didn't understand that as soon as he did this they would then be filled with sand again. Our daughter used to be the same when younger but has adapted as she's got older. Whilst this was going on his ice cream was melting in the sun and dripping onto his hands which were now covered in sand. It was quickly becoming a sticky mess which he didn't like the feel of on his skin. Whilst my husband and older kids found a place on the sand to sit, I took our youngest son to the public toilets to wash his hands. Someone was using the hand dryer when we walked in and he hates the noise so I had to cover his ears whilst he washed his hands. Then we walked back to the steps to the beach - he stopped and shook his head to indicate he wasn't going to walk on the sand again. I carried him across the sand and placed him on our beach mats. He didn't stray off the mat for the next hour or so and played with his bucket and spade whilst seated on the mat. He kept whispering to us that people were looking at him - they weren't but as the beach was busy he was uncomfortable being in such close proximity to others. Whilst he was digging he kept saying this isn't the same sand as we have at school and the spade is different to the one in his class. It then dawned on me that this is what he had meant earlier when he had been having a tantrum over the shape of the spade in the shop - in his eyes it needed to be exactly the same one as he uses at school - he likes the familiarity and routine which had been broken by coming to sand on a beach rather than using a sandpit at school. ASD children can find it a real challenge to be somewhere unfamiliar.

Although our daughter enjoyed being on the beach she was perplexed as we had said in the morning we were going to visit a particular beach but had ended up somewhere different as there had been no parking at the first location. We should know by now that it’s not wise to be too specific with our instructions for the day but it’s easy to forget.

The sensory impact of being on the beach makes days out hard work but it’s not something we should avoid.  Although if I'm honest we don't do them as often as we should as its stressful for everyone involved.

After Effects of Camping Trip

My husband and eldest son have returned from their camping trip this evening and the calm that has reigned in our house for 3 days has quickly disappeared. Unfortunately this is just what happens when routine is changed for our 2 children with ASD.  Our youngest son is flitting between tears, tantrums and the need to watch the film 'Rise of the Guardians' to keep calm.  He saw it for the first time on Saturday and he has now watched it 5 times. A similar pattern occurs every time a new film becomes a firm favourite.  It becomes an obsession and is watched on a loop. At the moment it is acting as a comfort blanket for him until he copes again with everyone being back.  Our daughter is shouting and screaming as her solitude has been disturbed.

They were both fully aware that our house would be back to normal tonight and it is not that they don't like everyone being together again but it takes them time to get used to everyone being around again.

We realised this from an early age with our daughter as when she was a toddler my husband would go away on business trips each month with work. She would refuse to talk to him for days - at the time we had no idea that this was connected with her need for routine and autism.  Our youngest son followed a similar pattern but took it to greater extremes.  In the past I have had to sit upstairs with our son until he falls asleep if my husband has been away for a few days.  He could not cope being in the same room as him, until he learnt to accept that Daddy was home again. 

With any luck ‘normality’ will reign again in our house in the morning!!

One on one time

This weekend our ‘neurotypical’ son has gone camping with my husband for some quality time away from the stresses of having 2 siblings with ASD. It will give him the chance to do things for him without having to worry about if his brother and sister are going to have a meltdown or cope with being out and about due to the effects of the sensory environment around them.  He is a caring and sensitive boy who always tries to cater for his siblings needs but he's entitled to have the opportunity where he can just do what he wants as well.

I am at home with our other two children and they are chilling and doing exactly what they want to do. We have been to the park and came home as soon as they had had enough.  Normally I try and reach a compromise between the 3 siblings, so as not to upset our ‘neurotypical’ son who generally wants to be out longer than them.  It may seem only a little thing but it can be the make or break of a meltdown, which will have knock on effects for the rest of the day.

It would be nice if we could share all these experiences as a family but there is nothing wrong in giving individual children their own quality time. Sometimes families get too het up about doing everything together all the time.  When you have children with additional needs in your family, your time as parents can be consumed by their needs.  However, your typically developing child still needs some alone time with you to feel important and to enjoy special moments with just you.  Don’t feel guilty about it. 

Having friends round

Our youngest son had a friend round to play today.  It takes hours of preparation as he has to sort out all the toys he wants them to play with the night before and he will then lay them out in a row on the floor. From the moment he wakes up until they arrive he repeatedly asks 'is so and so coming now?'  Time awareness is not a concept he understands yet - he expects everything to happen NOW.   Although this may be common with many 5 year olds, it is also something seen as a trait in people with autism.  Our 10 year old daughter is forever asking why someone has not arrived at the time they were expected.  Nowadays I tend to be more vague with my descriptions, so that it does not cause any extra stress.

Once our son's friends arrive he will dictate what they play with and if it doesn't go to plan, tears will flow as he will struggle to deviate from the plan he has in his head of what should be happening. If he gets very upset he may sit under the table to hide from everyone or want to snuggle up with me until he calms down.

There is always the inevitable meltdown when the friend goes home and during the evening he will either be shattered and fall asleep early, which means he will wake up in the early hours the next day and be raring to go for the day ahead or he will be hyper until very late.

I would like to say it gets easier as they grow older but so far our 10 year old daughter still follows the same pattern. All activities are put out the night before and when a friend chooses to do something else, our daughter will have a tantrum as she likes to be in control of their play date.  Occasionally, a friend has asked to leave early as they are not used to seeing this behaviour from our daughter and they don't know how to deal with her when she is in this state.

On a positive note both of them will do whatever a friend wants if they are at a friend’s house as they've both very compliant outside of the home environment.  Having a child with ASD is like having a Jekyll and Hyde character in the home as there are two distinct sides to them.

I have tried having friends over for all 3 of our children at the same time in the hope that it will keep them all happy but generally it makes things worse as it then becomes too much for our two ASD children. The best scenario is for one to have a friend over whilst the others are at friends or out doing activities.

It can be stressful having friends over with all the extra work involved in helping to prepare our children for the visit, then riding out the storm during/after the play date.  However, learning how to behave around others is such a vital skill for life, that it is not something to avoid.  Our children need to have the opportunity to grasp a level of social understanding and communication skills, even if it does cause them a degree of anxiety and stress.  I live in hope that in time it will get easier.

Autism Friendly Cinema Screening

This morning we had our first experience of an autism friendly cinema screening.  We didn’t even realised these existed until recently.  Dimensions hold them on the first Sunday of the month at various locations across the country.

http://www.dimensions-uk.org/what-we-do/autism-care/autism-friendly-screenings/

We watched Monsters University which is as good as the original and as a family we enjoyed the chance to all watch the film together. Our oldest two children have been to the cinema before and our daughter with ASD has always coped with the experience of watching a film, but finds queuing for tickets, snacks and all the adverts before a film more problematic than other children.  All of these things can be hard concepts for people with ASD to comprehend as they tend to want everything to happen now.

 

Today was the first time our youngest son has been to the cinema. We prepared him with a social story adapted from a template on the Dimensions website.  It included a picture of the cinema we went to, picture of where you queue for snacks etc and a short blurb on the film we were going to watch. To help with his concentration and sensory processing difficulties, he took his wobble cushion to sit on.

 

As the film is shown on a Sunday morning, it is quiet in the cinema and there were no queues for tickets and only a couple of people in front of us for snacks.  Once we were in the screen, we noticed that the lighting is not as dark as normal and the film didn't appear to have surround sound. You are able to take your own snacks to suit your child's needs and they use a smaller screen so it is not too overwhelming in size.  There are no long adverts before the film either.  What we hadn’t bargained for is that our son who is small for his age wasn't heavy enough to be able to sit on a seat without it flipping up to close.  He chose to sit on my lap, stand up in the aisle or grab hold of the chair in front. An autism friendly screening allows people with ASD to have the flexibility to watch a film to suit their needs without disturbing others as everyone there understands e.g. they can rock in their chair, walk about, be vocal and no one will make any comments on their behaviour.

As soon as the film had finished and we went outside, there was an instant change in our son’s demeanour.  After being in a cocoon where he felt safe, the world suddenly became too noisy and bewildering for him. He began to go into a meltdown and panicked that people were staring at him.  He has spent a couple of hours at home de-stressing himself – he tends to go into what we call ‘baby mode’ where he babbles away to himself, whilst he kicks his legs up in the air.  This calms him and he is now happily watching ‘Monsters Inc’ on DVD.  It looks as if there will be a ‘Monsters’ theme for the rest of the day, as if he’s not watching it, he is roaring as loud as Sully to scare us!  It seems to have been a successful outing and one we will do again.

Swimming at a Special Needs Group

Swimming is a difficult activity to do with our youngest son as he has an aversion to water.  Bathtime has always been traumatic as he doesn’t like to get wet.

However, with the help of a special needs swimming group which we can access once a week for an hour at our local pool, he now gets into the small pool. He has yet to let his arms and feet leave the safety of us or the side of the pool but it is a huge step forward. It gives us the opportunity to do something as a family as our other two children love swimming.  Until you have children with ASD you do not realise that It can be difficult to enjoy family activities altogether. More often than not we will do separate activities with each of our children as it reduces the stress for everyone involved.

Our youngest son hates getting splashed so this club gives him the chance to enjoy a swimming pool with only a few people around him. There's generally a maximum of 20 people so it is not noisy and the lights are normally dimmed which helps with sensory issues.   

It was by pure luck that we came across the special needs swimming group so it is worth investigating if something similar exists in your area. 

Unfortunately, using this facility has not helped bathtime at home, as he still prefers to stand up in the smallest amount of water possible and not let us clean him, as that would involve getting wet.  We get through a lot of wet wipes each week to ensure he is clean!! 

Fun at a Sibling Group

‘AWESOME’ was the word my oldest son greeted me with when I collected him from Kempston Outdoor Activity Centre this afternoon. He had been there on a day trip organised by the Sibling Project Club which is part of Carers in Beds. Today the kids enjoyed a range of activities - kayaking, high ropes, jacobs ladder and crate stacking.  They all seemed to be buzzing with confidence from their achievements of the day. This is the second activity our son has participated in this summer. A couple of months ago he did an afternoon of laser tag. These activities are funded by the Sibling Project Club with no cost to the children. It gives them a chance to be a kid and forget about the additional stresses of having a sibling with a disability for a few hours.

 

Groups like this are a lifeline for children who have siblings with disabilities. It is easy to take for granted that siblings cope with living with a brother/sister who has a disability and the extra pressures it can put on their lives.  Our son often feels that he is caught in the middle of his older sister and younger brother who both have ASD and the attention they demand from us.   

Besides day trips our son attends a monthly group held at a local youth centre. They have the chance to play games, play outdoors, do craft activities, computer games and make friends with other children their age in a similar situation.  Carers in Beds run groups at 3 locations in Bedfordshire - Kempston, Dunstable and Biggleswade and do groups for 2 age groups (4-9 years and 10-16 years). 

All details can be found on their website http://www.carersinbeds.org.uk/siblingprojectclubs.html