Tuesday, 30 July 2013

Stress of the Supermarket

I should know better by now than to visit a supermarket with my kids in the holidays – tantrums will start in the shop followed by meltdowns at home.  I do the weekly shop of an evening in the holidays, but sometimes I need to pop in for the odd item when I have the kids with me. 

All children want to buy something when they go into a shop and as parents we expect it to be a stressful time.  I generally warn mine that I’m not buying them anything before we enter the shop, but they still whine and badger me the whole trip.  Then there’s fighting over who will push the trolley or carry the basket.  It’s impossible to go in a shop with kids and just hold items – they have a need to push/carry them around.  Some shops now have baskets that you can push like trolleys and I can guarantee my kids will ram it into the back of one another or someone else if I’m really unlucky.

Supermarkets can be overwhelming for anyone, with so much choice available.  If you have ASD, going into a supermarket can cause sensory overload.  The fluorescent lighting can be too stimulating, shelves packed with colourful packages may be too much of a distraction and they are generally crowded and noisy places to be in.  Queuing is a hard concept to understand if you struggle with social expectations.  Automatic doors at the entrance can be captivating for some as they like to watch the repetitive action, whilst others find them a source of distress.  Our youngest son used to spend the whole time screaming at them as he didn’t like them opening and closing all the time.  This has improved as he has got older.

I tend to stick to the same supermarkets now, so that our children know where the aisles are and if I take them with me, I only go in for a few items so that we can do a quick in and out of the shop.  I attempt to use self service tills to save queuing but this can cause extra hassle as our youngest son will insist on sitting on the place where the bags are supposed to go.  It ends up taking twice as long as we continually need assistance to get rid of the error messages on the screen.   Even though we go through this process each time and he gets frustrated, he still insists on sitting down and causing the same problem on every visit.  I prefer to use the self service tills though, as our son doesn’t like people talking to him and will go mute if we go to a normal till. 

Trips to the supermarket have improved though, as in the past our youngest son has pulled items of shelves, yanked my ear-rings out of my ears, sat on the floor screaming and refused to move.   Then when I got him back to the car, he would make his body go rigid, so that he couldn’t be put in his car seat.  I’ve stood out in a car park before for 45 minutes waiting for him to calm down, so that I can put him into his car seat.  He still gets anxious if we are in there too long, so we try and make the trips short. 

Going to a supermarket though is a skill he needs to learn for the future, so it’s something we will persevere with and as he gets older, hopefully he will develop more coping strategies.  His sister has certainly got better as she has got older, although I could do without her shouting out of my pin number when I’m paying! 

Sunday, 28 July 2013

Trying to eat out

Going out for a meal is not always an easy thing to do.  Some restaurants can be too busy, noisy and have a lot of distractions to cause sensory overload.  Others may not cater for plain enough food to match our children’s tastes. We have found that our two ASD children have a restricted diet, our son’s more than most.  Yesterday we had a meal at a burger restaurant.  It suited our children as we were able to sit in a booth, which offers some protection from distractions and privacy from others.  Our youngest son always says people are looking at him.  If we weren’t sitting in a booth, he would be hiding under the table.  This causes lots of comments as people presume him to be naughty and have no table manners.
The kids chose a plain burger and fries, which seemed a good option.  However, as it was a freshly prepared burger and not a processed one, it was not a perfect round shape. This caused immense problems for our daughter and she refused to eat it, as it wasn’t the ‘normal’ burger shape.  Our youngest son saw a speck of black on his burger and that stopped him from eating it.  He doesn’t eat fries anyway, so he just ate a couple of pieces of cucumber from his plate.  Simple things like this that most of us would take in our stride are big issues for people with ASD.

As parents, we are conscious of looks we get from other diners when meltdowns occur.  More often than not we settle for the easy option and go to McDonalds, where we can sit in the car if it’s too busy to go inside or we will get a takeaway meal to have at home. 

To help our children understand the social expectations required of them when out and about they need to experience activities like eating out.  We must learn to ignore the comments made by others who do not understand our children’s needs.  As a country though, more autism awareness training is required for people working with the general public, so that they understand how people with autism think and understand the world around them.  With more people being diagnosed, there will be a greater need for awareness as the current generation progress to adults.  Support the NAS campaign entitled ‘Push for Action’.  Its’ aim is to ensure adults with autism get the support they need http://www.autism.org.uk/push

Thursday, 25 July 2013

The Summer Holidays Begin!

Day one of the summer holidays and our youngest son woke up with the words 'is it school today?' I have followed my own advice and done the countdown chart to prepare him for the summer holidays over the past few days.  Yesterday he seemed to have understood that the summer holidays had now begun.  He does struggle with the concept of time awareness though. When I explained it’s the holidays now and showed him what we have planned for the new few days on a visual holiday timetable he said 'I start Year 1 on Monday then!' It’s going to be a long 6 weeks for him.

Our daughter’s day began with tantrums as she did not want to accompany us to a birthday party that our youngest son had been invited to at a soft play area.  Once she arrived, you couldn’t get her out of the place.  All of my kids love rough and tumble play, so it’s an ideal environment for them.  It helps with sensory processing difficulties that two of them suffer with.   We went to a Jungle Jim’s soft play centre, which is perfect for children with ASD, as it’s not too big and so doesn’t get too noisy or crowded and it has a sensory corner.  I’ve noticed on their website that once a month they hold an evening for Children with Complex Needs and their families to enjoy the soft play area http://www.junglejimsplayland.co.uk/special.html
Since we returned home from the party, the day has gone steadily downhill and there have been plenty of tears and tantrums, due to the lack of structure that a school day gives my two children with ASD.  Then our ‘neurotypical’ son has been upset by the high level of attention his siblings have demanded from me.   It’s a juggling act and it will get easier as the holidays go on, as all the kids will get used to being at home together with one another every day, rather than being out at school.  Although I try to ensure there is some structure to the holidays and visual timetables highlight the activities we have planned for each day, I leave room for free time, as it’s an important skill to learn how to occupy yourself.  We have a variety of activity books, puzzles, games and craft projects that can be dipped in and out of during the holidays

I can feel the need to stock up in chocolate to get me through the holidays. However I'm resisting the urge so far as I am trying hard to get fit. A friend and I have started walking of an evening and so far this week we have clocked up 12 miles. It’s a great way to have some me time, conversation with another adult and will give me the energy to start afresh tomorrow and see what day two of the holidays brings.  It can only improve.

Tuesday, 23 July 2013

Anxiety of a School Trip

School trips were always something to be excited about when I was little and a high point in the school term.  Our daughter gets so stressed by the whole concept that I wonder if it’s worth the hassle. 

Today her year group had planned to visit our local RSPB centre and with the nice weather we’ve been experiencing recently, it should have been an enjoyable day out.  Last night, the screaming and shouting began as she needed a rucksack to take her lunch in, but wouldn’t use her school one as that’s for school and not a school trip.  Everything is black and white in her world and there is nothing in between.  Then she couldn’t decide what clothes to wear as it was non uniform, which just confuses life as it’s a school day and so uniform should be worn.  Our daughter is fixated by rules and routines, which leaves little room for compromise.  This morning the tears were flowing and panic was setting in – where were the toilets at the RSPB, it was too far to walk, too hot to go out, she didn’t want to take the food she had chosen for her packed lunch etc.

We go through this experience each time something different is happening from the normal routine of life.  We try so hard to offer as much support and preparation as we can, but each time we face the same battles.  Change in routine is a huge difficulty for someone with ASD to cope with.  Fingers crossed as our daughter gets older, she will learn to use the strategies we put in place and will understand that life can be unpredictable and that’s ok.   

As an outsider it can be hard to appreciate that something as simple as a school trip can cause so much stress to a child and the knock on effect it has on siblings.  Our youngest son who also has ASD doesn’t cope well with loud noises, so the screaming, shouting and tears from this morning’s anxiety caused him distress.  He spent the whole time with his hands over his ears to shield himself from the noise.  Both sons can get upset by the level of attention our daughter requires when she is in a high state of anxiety.  There is no easy solution but we get through it each time. 

I collected our daughter from school this afternoon to be told the trip had been cancelled due to the predicted thunderstorms.     I felt like screaming - did we go through all the stress this morning for nothing?!!  But a little voice inside me tells me that maybe today’s anxiety will make the next stressful situation that little bit easier to deal with.  I can live in hope!

Monday, 22 July 2013

Sleep – What’s that?!!

Our youngest son has suffered sleep problems from an early age.  It was a shock to the system as our other two children slept through the night from 6 weeks old.  I thought it was payback time for having 2 sleeping beauties.  

Surviving on two hours sleep a night might have been fun for him, but it quickly began to take its toll on me.  Although, it is amazing how quickly the human body adapts to having only a couple of hours sleep.  In my case, the amount of lucozade and chocolate I consume probably has a bigger effect!!

I have lost count of the number of times I have watched Mickey Mouse’s Clubhouse through the night or The Snowman in the summer nights.  Luckily we are detached as screaming and shouting to wake the whole house up is common place. 

By 2011 sleep deprivation was getting to me and the controlled crying technique had no effect on the situation.  The paediatrician referred us to a sleep clinic, which involved an intensive programme that needed to be followed with consistency.  I was up for the challenge, but had not envisaged our son doing high jumps over the stair gate to his bedroom, so that he could escape.  It was meant to ensure he stayed in his room, not to be used as part of an assault course.  I spent my evenings sitting at the top of the stairs, normally for hours, but I had to win this battle!!

At the same time as seeking advice from the sleep clinic, we heard about the benefits of a weighted blanket.  It can help a person feel secure by applying deep pressure from the weight of the blanket and is very similar to the principle applied to newborns when they are swaddled in blankets.  We sourced a weighted blanket from a company called Sensory Direct http://www.sensorydirect.com/  and were able to hire one for two weeks to see what effect it had on our son’s sleeping pattern.  Almost overnight, he stayed in bed.  We were in shock that something so simple could have a life changing effect on something that we all take for granted.

We still go through blips when sleep is disturbed due to a change in routine or sensory overload, but it is easier to manage now as we know there will be times when sleep will return again.  At the moment the transition from term time to school holidays is causing a lot of anxiety in our son’s world, so he is awake most nights from 2am and this will probably continue for the next couple of weeks.  Then the holiday routine will be established, but within a couple of weeks, we will have to prepare him for going back to school and that will disturb his sleep pattern again.   Currently my nights are filled with making every puzzle we have in the house and watching Mickey Mouse’s Wizard of Dizz on a continual loop!!

Sunday, 21 July 2013

Support Network

Family life can be challenging at the best of times, but with children that have additional needs, life can place extra demands on you.  Try and have a support network around you of family and friends who can offer help from time to time.  This may allow you the freedom to do the shopping by yourself.  If any of you have family members suffering with ASD, you will appreciate how traumatic an experience a shopping trip can be with the sensory overload that it can cause.   It may give siblings the chance to have some time away with their friends in a less stressful environment.   Or it may give you the chance to talk to someone and offload.

Support groups are a fantastic place for meeting other families in a similar situation and this is where I have learnt so many tips from other parents about what works for them.  Local groups in Bedfordshire for families with ASD include:

·         Autism Bedfordshire www.autismbedfordshire.net

·         Carers in Bedfordshire www.carersinbeds.co.uk

·         Family United Network (FUN) www.familiesunitednetwork.co.uk

·         National Autistic Society (NAS) – look on their website for local groups www.autism.org.uk

·         Outside-In www.outsidein-solutions.org

·         The Avenue (new group starting in October 2013) www.theavenuesupport.co.uk

Please share details of other groups that have supported you.

Saturday, 20 July 2013

Me Time

What’s that I hear you ask?!!  I know the feeling, as there have been plenty of times where I feel ready to scream when my 3 children who all have different needs, seem to want part of me all the time.  I have learnt over time though, that I do have to pencil in time for me to do something I want to do, even if it’s only for 10 minutes, so that I feel like a person again, rather than just a ‘mum’. Don’t get me wrong I love my role of mum, but I am allowed to do things for me as well.  It has taken me a long time to realise this and I still feel guilty when I do something for me, but I’m a much happier person afterwards, so know it’s the right thing to do.

Since Easter I’ve been doing Zumba on a Monday night with some friends – my coordination has not improved over the past few months and I do wonder if I will ever move in the same direction as the rest of the class!!  It’s a great laugh though and the 1980s AHA track ‘Take on Me’ seems to be forever in my head, as we do one of our longest routines to the song. 

Last weekend, I completed my first Race for Life and we aimed big and went straight for the 10k.  Although, I hasten to add we walked and not ran.  I’ve now signed up to do the Starlight Hike in September, another 10k race, but held at night time.  Hoping that will be easier than the heat we experienced last week.  http://www.sueryder.org/Get-involved/Events/Starlight-Hike

You would think I would be super fit with all this exercise, but alas I still weigh the same that I did when our youngest son was born 5 years ago.  I can no longer use the excuse of excess baby weight, now that he’s about to enter Year 1 at school in September.  Clearly, the quantity of chocolate I eat is connected with my extra middle!! 

I love to read and enjoy writing.  This year I have completed an Open University course in Autism and another one through the NAS on Aspergers.  I managed to do the last course through obtaining a carers training grant from our local carers charity.  If you are registered with your local carers group, it is worth looking at to the services they provide.  http://www.carersuk.org/support/our-local-branches  As well as information and support groups, they run training sessions.  I had a go this term at a painting class.  I'm not going to be the next Monet, but I came away so relaxed that it has given me a new interest to enjoy at home.  Our 8 year old son loves artwork, so it’s something I can sit and do with him as well for some quality time together.  Our local group, Carers in Bedfordshire has a range of activities – photography, walking, meditation, IT skills etc.  If you live in Bedfordshire, are a carer, check it out at http://www.carersinbeds.org.uk/

Wednesday, 17 July 2013

Countdown to the Summer Holidays

Having a 6 week break from school can seem daunting to any parent.  It’s a long time to occupy children who nowadays expect to be doing different activities all the time to keep up with their peers.  When I was younger, a day at the park or amusing yourself with toys at home was not unusual and would have been deemed as fun.  These days, kids can go to a summer camp to learn new skills or spend a week at a play scheme doing a variety of activities. 

When your children are on the Autistic Spectrum, school holidays are not always seen as an enjoyable experience as their normal routine is disrupted and they may find it difficult to deal with this change.  We tend to find that behaviour goes downhill during times of change and it can be a very stressful period with more meltdowns than normal.  As a family we have introduced a strategy this year to help our youngest son cope with the transition between term time and school holidays.  We use a countdown table as shown below to prepare him for how many sleeps there are before the change will take place.  This has been so successful, we now use it for any change we think he may struggle to contend with. 

How many sleeps until the summer holidays
Summer Holidays
(insert picture to represent holidays to your child)


For the holidays itself, it can be useful for your child if you prepare a timetable with them of the activities that will occur.  It could look something like this:

Visit the library

Friend coming round to play

Stay at home


Baking cakes

Go to the park

Visit grandparents

You may choose to use pictures for visual aids or your child may be fine with the activities written down.  My 10 year old daughter likes to use a whiteboard, so that she can write the timetable herself and then wipe it off at the end of the week and start afresh.  There may be days where you want to put activities down that you are doing in the morning, as well as the afternoon.  There is no set formula, personalise this tool to suit your own family.

On the table, I put ‘stay at home’ on Wednesday, as it is important that gaps are left for time when you will be at home with nothing planned.  All children need to learn how to deal with boredom and create ways to occupy themselves.  After asking our 8 year old son, what he could do to entertain himself if he felt bored, he soon compiled the following list:

  • Build with lego
  • Read a book
  • Drawing
  • Play in the garden
  • Play on his DS
  • Listen to music

This is an important skill to create independence.  Children with ASD may require more guidance than others to learn how to do this, but it is something we should try and teach them from an early age.  If an ASD child finds it hard to think of activities to do on their own, give them a choosing board where you put a selection of pictures/written words of activities and they will select one to do.  It may be best to limit the choice to a couple of activities in the beginning, but as their confidence grows, they will feel more comfortable in making their own decisions from a wider selection.

(You can tell I'm new to blogging as I have not worked out how to insert clipart into my blogs yet!!  I had it all created in word with visual aids in my tables, but have lost the pictures as soon as I've copied here.  Please bear with me as this is a learning curve for me!  Any tips on how to do this are welcome.)


Blogging is a new concept to me, but something that has been suggested as a way for me to share with others going through a similar situation, what life is like with 2 of my 3 gorgeous children being on the Autistic Spectrum and how we all cope with family life on a daily basis. 

Days can be filled with tears, laughter, tantrums and meltdowns, but I wouldn’t change my 3 cheeky monkeys for anything in the world.  They all have their own personalities and different ways at looking at how the world works.  I see one of my roles as a mum is learning how to understand them and give them strategies to deal with whatever life throws at them, rather than them having to change their way of thinking, so that the world understands them.

·      My eldest child is a daughter and is 10 years old.  She was diagnosed 2 ½ years ago with Aspergers with Challenging Behaviour, Oppositional Defiant Disorder (ODD) and Sensory Processing Difficulties.  Her main passion in life is drama and being the best at whatever she does. 

·      My middle child is a son and is 8 years old.  He is the ‘neurotypical’ one of the bunch and copes with a lot for someone so young, as he is often caught in the middle of his two ASD siblings.  He loves playing rugby and follows Wales and the British Lions.

·      My youngest child is a son and he has just turned 5.  He was diagnosed almost 3 years ago as being on the continuum of the Autistic Spectrum.  This has now been identified as Aspergers with Challenging Behaviour, Selective Mutism and Sensory Processing Difficulties.  He loves being outdoors and his current goal in life is to be a ‘gibbon’ when he grows up!

My name is Joanne; I am married, 40 years old and on a continuous journey to learn how to turn ASD into a positive attribute for all of my children.  I have been on numerous parenting courses, studied an ASD course with Open University and just completed an Aspergers course run by the National Autistic Society (NAS).  I am no expert by any stretch of the imagination and many of the tips I have learnt have been from speaking to other parents going through similar experiences. 
My goal for this blog is to share things that have worked for us as a family and to learn new things that work for other families.