Tuesday, 31 December 2013

Reflection of Successes of 2013


As it approaches midnight and the dawn of a new year, it is time for reflection and although there have been lots of meltdowns and daily sessions of stress and anxiety this year, there have been a lot of positive things achieved as well. 

The biggest thing to help the development of our youngest son has been the Statement of Education that he was awarded this summer after a 6 month process involving lots of reports written by various professionals as well as a lengthy one by myself.  He now has the 1:1 support at school that he needs to function on a daily basis so that he has the chance to reach his full potential. Without this he would not be able to access his sensory diet of high impact activities every 15 minutes and without that his world would fall apart.  

Our daughter has shone in her drama group that she attends outside of school and has performed on the West End stage for the second time as well as at a local show and the school panto. Being someone else gives her a new lease of life as she can hide behind the character. Her confidence has doubled and she's found an interest she enjoys. 

The biggest breakthrough for her has been realising that it is ok to ask for help and learning to discuss her emotions. It's still early days but we are making progress which can only help with her development for independence as she grows up. 

Our youngest son has begun to thrive with the help of regular dietician appointments.  As well as his daily protein milkshake to boost his vitamin intake, he has now tried 2 new foods this year - apricots and fruit winders.  This may seem a small accomplishment and something most parents take for granted, but as a parent of ASD children it is a small miracle to add colour to their diet as it is generally very bland in its choice and brown in colour. If our youngest son had his way he would live on yorkshire puddings!

We have finished the year on a good note with all 3 kids having a playdate with friends and for two hours they played nicely with no arguments. Three of the five kids have ASD but the shared understanding between them seems to aid better play and it helps the siblings to realise there are others that live in their shoes and understand what it is like to have a sibling with ASD and the challenges it can bring to daily life.

My goal for 2014 is to find some more 'me time', so that I can enjoy my craft activities, read the mountain of books that are building up around me and continue to walk/jog my way to good health.  I will continue with my volunteer work and increase my knowledge of ASD so that I can ensure that all our kids get the best start in life that they deserve.

Happy New Year to you all.

Thursday, 26 December 2013

Christmas Experience

The anticipation of Father Christmas arriving made bedtime on Christmas Eve more stressful then normal. Our two oldest children were keen to go to bed early so that their presents would be delivered but our youngest son had other ideas. His stocking was put under the Christmas tree as he didn't want Father Christmas entering his bedroom. Then he decided he couldn't sleep in his bedroom and wanted to stay downstairs. This was not helping with my plan of laying the presents under the tree without little eyes watching. We let him watch a film in the hope that he would fall asleep but instead he woke up more!! By 9.30pm he asked if he should go to sleep to which we both answered yes!! It was 11pm before he gave in and Father Christmas could deliver his presents. 

At 12.45am our eldest son came bouncing into our bedroom to say that Father Christmas had filled the stocking at the end of his bed. I quickly told him to go back to bed for a bit longer and then was woken up again at 1am by my mobile phone beeping. It was our daughter texting me to wish me a Merry Christmas. I discovered the next day that she had texted everyone on her contact list at 1am!! As she was awake she thought everyone else should be. 

By 6am our three children were all awake and desperate to go downstairs and see what Father Christmas had left for them. As soon as our youngest son walked downstairs he saw his stunt scooter so he was happy to ride around the house whilst his siblings enjoyed unwrapping their presents. 

Our living room is normally filled with sensory toys and we have now gained a few more in the shape of moon shoes, wobble deck, fidget toys and a keyboard. 



By lunchtime the anxiety levels were rising again and our youngest son was not going to join us for Christmas dinner. Some battles are not worth having so we let him choose what he wanted to eat - mini eggs and sausage roll. Not your typical Christmas dinner but he was happy. Then the rest of the day was spent in meltdown with shouting, screeching, sobbing and hiding under things so that he felt secure. By early evening our youngest son was calm again sitting on a rocking chair chewing a chewy stixx and squeezing a light up ball.  He was happy and that is all that matters.  

Sunday, 22 December 2013

Christmas Anxiety is starting to show

The stress of Christmas is showing in our house and our youngest son has spent most of the time since he packed up school on Friday making dens under our dining table and chairs with quilts and cushions, so that he can shut himself off from the world.  It is keeping him calm and gives him a place to retreat when everything becomes too much for him.
 
Christmas for our children is spread over a week.  They will be getting a present from one set of grandparents tomorrow, have another family present on Christmas Eve, then on Christmas Day they will have their presents from Father Christmas and us.  Next weekend they will receive their presents from my mum.  As well as making the magic of Christmas last that much longer, it also stops it becoming an overwhelming event and seems easier for the kids to manage this way.  If we put all their presents out on Christmas Day, our ASD children would not know where to start and Christmas Day would quickly disintegrate into a huge meltdown.  It is likely there will be mini meltdowns this week and we expect them to happen, but they will be easier to manage.
We have double checked with family that none of our youngest son’s presents have been wrapped up, as he came home from school with a present on Friday that was wrapped and it caused him to scream and shout for an hour and in his words 'my brain is angry'.  When he sees one present like this he panics that Father Christmas will forget to keep his presents unwrapped.  It seems such a small thing, but the unknown element of a wrapped present can be a frightening concept to someone with ASD.

 

Saturday, 21 December 2013

Christmas Tree


School packed up yesterday, which means it is now time to start getting ready for Christmas at home.  As our youngest son suffers a lot of anxiety around the idea of Christmas, we find it easier for him if we start getting in the Christmas mood once the school holidays have begun.  

I put the Christmas tree up whilst the kids were at school and hung the lights on it, then asked them to decorate it together when they got home from school.  This caused so many arguments, as our youngest son wanted to hang every pair of pants/boxer shorts on it that he owns and our other son was horrified at the idea.  I made the mistake of getting a book from the library called 'Aliens love Panta Claus' and read it to our youngest son.  Aliens in the book are Santa's helpers and they decorate trees with underpants and so our youngest son decided that when our Christmas tree came out of the loft, we would decorate it with pants.  I had hoped that 3 weeks later, he would have forgotten about the idea.  Whilst our two sons were arguing over what decorations were going to be put on the tree, our daughter decided she would go ahead and decorate it.  This caused a flood of tears, as everyone wanted to decorate the tree in their own way and no one agreed on anything that the other one wanted.  

In the end, I gave our eldest son the job of putting the tinsel on the tree, our daughter put the baubles and star on the top and our youngest son was allowed to put his personal touch to the tree.  He added his toy Disney planes, soft toys and one pair of clean Spiderman boxer shorts.  It may not be a conventional looking Christmas tree, but it is still standing and in previous years our youngest son has knocked it to the ground.  It will probably be back down again in less than a week, as that will be as long as our youngest son can tolerate the change to the room, but we are hoping that as he gets older, the tree can come our earlier each year.


We need to look after ourselves

I am a great one for giving advice to friends to look after themselves but rarely follow it myself!! Last week saw me struck down with the flu and resulted in me being in bed for nearly 3 days which is unheard of for me. By now I should have learnt, as every year near Christmas I get run down due to the extra anxiety Christmas puts on our youngest son, which results in him sleeping less than normal and being wound up like a 'Duracell bunny'. This in turn means I sleep less and my immune system plummets and I seem to pick up any germ that is going!   

Losing 3lbs over the past week may help kick start my annual get fit/weight loss campaign for the new year. However, I'm also going to use it as a wake up call to remind myself that I need to take time out to relax, eat regular, healthy meals, exercise and have fun so that I can stay fit and healthy.  

Saturday, 30 November 2013

Strategies to cope with Christmas

With December here tomorrow, Christmas is just around the corner and at the moment if I am honest, I am thinking ‘roll on January’, as the heightened levels of anxiety in our household are soaring through the roof.  It’s such a shame as I have always found Christmas to be a magical time of year, but unfortunately for children on the spectrum, it can be a stressful time as normal routines are thrown out the window and they are confronted with sensory overload.  To try and make things run smoother for our ASD children we have adopted the following strategies:

  • Countdown chart to show how many days until it is Christmas Day.
  • Put our Christmas tree up once the children have packed up from school.  This seems to help with them understanding that now school has finished, it is time to celebrate Christmas at home.  If we put up our tree this weekend, it would be very hard for our youngest son to understand that it is not Christmas for another 24 days, as he has very little awareness of the concept of time.  He expects things to happen in the here and now.  It also reduces the stress of having to move furniture around in our living room for too long to accommodate the Christmas tree.  Our youngest son has been known to knock over our 6ft Christmas tree when he has gone into a meltdown.
  • Last year we let our youngest son decorate the Christmas tree, as we thought he would be more accepting of it and he chose to put his soft toys on it.  Although it is not what we would have chosen, it did mean that the tree stayed up for a week without being toppled over.  This week we have read a book called ‘Aliens Love Panta Claus’ about aliens that help Father Christmas deliver his presents and they decorate Christmas trees with underpants.  I’m hoping this idea does not stick in our youngest son’s mind for too long, as otherwise we could have a very unusual tree this year!!
  • We keep Christmas Day and Boxing Day just for us at home and then see family before and after Christmas, so that presents and guests are not all received at the same time.  If we visit family or they come to us, we have a quiet area, so that our ASD children can spend some time away from everything if it becomes too much for them.
  • As mentioned in an earlier blog, our youngest son does not like his presents wrapped up, so his are left unwrapped under the tree and in his stocking.  He also requests that his stocking is kept downstairs and not in his room, as he doesn’t want Father Christmas to go into his bedroom.

We don’t expect to have a tantrum free Christmas, but fingers crossed each year it will get easier and maybe one year we will have a tree decorated with tinsel, baubles and decorations, rather than Mickey Mouse and the Gruffalo!

Tuesday, 26 November 2013

Advent Tree

Preparation is going to be the key to helping our 2 ASD children cope with all the changes to normal routine next month in the run up to Christmas.  I have come across an idea which I'm going to use this year to see if it helps them both. 

Our daughter has sat down with me and come up with 24 different activities that we can do with a Christmas theme from 1 - 24 December.  They are simple ideas that range from decorating our Christmas tree, choosing the tv programmes we want to watch as a family over Christmas, hand delivering Christmas cards to watching our daughter perform in her school panto.  I have written them all onto pieces of card which I've laminated and hung on a driftwood shape tree we have at home. 


Everyday in December we will choose one activity to do and I have purposefully made some of them easy to do after a day at school like having hot chocolate and marshmallows or reading a Christmas story.
 
Fingers crossed it will get all three children into the festive spirit, but it will also help our daughter and youngest son to prepare for what can be the biggest sensory overload they will experience all year long. 

Sunday, 24 November 2013

Countdown to Christmas

Now that our eldest son has celebrated his birthday this week and the anxiety that our 2 ASD children associate with this has disappeared, we can concentrate our energies onto the countdown to Christmas.

Once I became a parent I couldn't wait to share my childhood traditions. We were excited to see the faces of our oldest two children when they were toddlers coming downstairs to find the footprints of Father Christmas across the floor from our fireplace to the Christmas tree. We had the video camera at the ready to film the magical moment. Our son was ecstatic at the sight, whereas our daughter kept shouting about the mess on the floor and wouldn't open any presents until it had been hoovered up. This was years before she was diagnosed with ASD, so at the time we didn't think anything other than it was a bit odd but she was only three and so tantrums were normal at this age.  Now looking back we can see it was the change in the normal layout of the living room that had caused her to be upset and the fact that we had not prepared her for this happening.

Our youngest son has the biggest anxiety over Christmas though. Until last year he has never been interested in his presents. On Christmas Day 2011 he left his presents unopened under the tree all day and spent the day in a rage. Our oldest son ended up opening up our younger son's presents on Boxing Day and this still didn't spark any level of interest in him wanting to play with his new toys.
 
Last year I attended a visual aids course and one of the speakers was a mum of twin autistic boys. She made a suggestion that as ASD children do not like the unknown, a way to cope with presents is to either not wrap them up or to take a photo of what is inside the gift and use that as the gift tag. A simple idea that we had never thought of, but we had nothing to lose so decided not to wrap up our youngest son's presents last Christmas. We were amazed with the transformation as he actually played with a couple of new toys. Since then he has asked for his presents not to be wrapped up for his birthday this year and we have already written to Father Christmas to ask that he does not wrap his presents up. It does have a knock on effect in our house though as our daughter does not understand why Father Christmas will make the exception of not wrapping up her brother's presents as presents should be wrapped up in her 'black and white' world.  However, if it means he is less anxious then it's worth doing it as he will be happier on the day and as he gets older we may be able to progress to wrapping presents up, but having a gift tag with a picture of what's inside the present.  Although it may seem different to what most households do at Christmas and not what I had planned on doing for my children, it does save lots of time on wrapping up presents, so I'm not complaining!!


Sunday, 17 November 2013

Birthday Anxiety

Our eldest son who is the 'neurotypical' one of our 3 children turns 9 this week. Unfortunately his birthday causes stress to our 2 ASD children which is upsetting for all three of them, as well as to us as parents. We have always envisaged our children's birthdays being happy occasions and not days where careful planning has to be done to reduce the number of tears and tantrums.

Both of our ASD children do not like their normal daily routine being changed, so birthdays even their own present problems.

Our youngest son has the additional difficulty that he does not like presents being wrapped up due to the unknown quantity of them. During the past year we have made the discovery that if we do not wrap his presents up, he is more likely to play with new toys and will be less distressed by the occasion. To avoid him being anxious last year by the sight of wrapped presents our eldest son got us up at 5am to watch him open his presents whilst his brother was still asleep. Unfortunately our youngest son woke up as our eldest son opened up his present from us and came downstairs and broke it. This was not a good start to his birthday celebrations. To ensure there is not a repeat performance this week our eldest son at his request has already received our main present. 

We are going to go out for dinner to celebrate our son's birthday and are not expecting it to go smoothly but we have to persist with family outings to help our ASD children get used to these situations. There will be tears and tantrums and to make up for this, our eldest son who is a massive Dr Who fan is going to watch the 50th anniversary episode in 3D at the cinema with just his Dad next weekend. We know he will get no peace at home watching it, as his siblings will shout all the way through it, as it is not their choice of programme. This way he can do something just for him and have the reassurance that it won't be spoilt by his siblings having a meltdown.
 
Once we get through this week, we then have to contend with Christmas, which is another story!!

Saturday, 16 November 2013

Sensory toys to make at home

It's been another creative night where I've been experimenting with sensory toys that can be made easily at home with little cost involved.  Our daughter has helped me with a sensory glove.  Each finger/the thumb has a different texture inside it - we have chosen paperclips, sugar cubes, pasta, tissue paper and cotton wool.  The body of the glove has been filled with scrunched up newspaper and then we tied it at the top and decorated it with a face.  As well as getting used to the feel of different textures, a child can use it as a puppet and let their imagination run away with them. 

 
 
Another quick and easy project is to fill a ziplock bag with hair gel and add some plastic sea creatures.  Gaffer tape the top, so that the hair gel doesn't leak onto the floor.  It's a great sensory bag to squeeze and for children that don't like getting messy, it is a simple way for them to feel a slimy texture without getting any of it on them!

Friday, 8 November 2013

1:1 Swimming Lesson

Our two oldest children are both confident swimmers and love being in the water, whereas our youngest son has always struggled with bath time.  We have taken him to a local special needs swimming group as it is a quieter environment, but he is still reluctant to let go of our hands even when he has a swimming jacket or arm bands on.  Tonight he had his first 1:1 lesson in a private pool and the difference this has made is astounding.  By the end of the 30 minutes he had let go of the instructor's hands and was kicking his legs and trying to do doggy paddle with his arms.  He felt secure in a woggle and arm bands, there was no noise around him, as only him and the instructor in the pool, which meant his anxiety of being splashed vanished as well.  I am so proud of the big step he has made tonight and he says he can't wait to go again next week.  If he can make this amount of progress in one session, he will be swimming in no time at all.  Once he has developed the confidence to swim, we can then conquer his fear of being in a pool with other people.  It may seem such a small thing for a lot of children to splash about in a swimming pool, but for our son, he has just climbed a huge hurdle.

Tuesday, 5 November 2013

Giving a Talk

Two years ago I never would have dreamt that I could stand in front of a group of people and give a talk. Today I did just that, presenting a Sensory Processing talk to a small group of parents/carers of children with ASD. As well as talking and answering questions, I had a selection of sensory toys we have at home to show parents what is available to buy.  Much of it is affordable and in everyday shops without people realising the sensory benefit it may have for their child.

It is  the third time I have done the talk and I still get nervous each time, but I'm buzzing afterwards as it is rewarding to be able to share all that we have learnt as a family and I hope that something I have spoken about may help someone else. We have often found that one tip that we have learnt from another parent has made a huge difference to the lives of our children and so sharing information like this is invaluable to parents of children with special needs. I don't claim to be an expert in sensory processing, but can offer an insight into our experiences of having two children with sensory processing difficulties and strategies/equipment that have worked for us.  It is trial and error as to what will work for an individual child and as parents we are still learning and always open to new ideas.  It is only by sharing these ideas that more people can benefit from learning about Sensory Processing Disorder and the effects it can have on a person.
 
Below is a clip from YouTube that explains the basics of Sensory Processing Disorder.
 

 

Friday, 1 November 2013

Halfterm Anxiety

Halfterm can be unsettling for a child with ASD as the routine they have got used to for the past 6 or 7 weeks suddenly changes. Most children enjoy not having to go to school but when you have ASD it can make you feel more anxious, as you aren't sure what you are going to do each day and there are more gaps for free time than if you were at school for the day.
 
Our youngest son struggles with the holidays and it is only now as we approach the end of the week that he is getting used to the fact that there is no school this week. I've lost count of the number of times he has asked me 'is it school today, how many sleeps until school'. A countdown chart works well for these situations as a visual aid to help him understand when he will be going back to school.  Making a timetable of what activities you are going to do each day will also help to form the new routine for the holidays.
 
We tend to find there are more meltdowns in the holidays and I'm always looking for new ways to help calm our kids and distract them from their anxieties. Today I have made a glitter bottle - fill 2/3 of bottle with water then add a bottle of glitter glue and some normal glitter.  Make sure the top is done up tightly, shake the bottle and watch the glitter float around the bottle until it settles on the bottom. It is relaxing and visually stimulating.  Our daughter has already asked if she can keep this in her bedroom.



Another calming tool I've experimented with is a glass jar filled with small pieces of pipe cleaners. Use a magnet on the outside of the jar and watch the pipe cleaners magically lift up to the top of the jar. At the moment we have been using magnetic power stones to move the pipe cleaners up and down, but when I find a big traditional shaped magnet I think there will be more power behind the magnet and so more pipe cleaners will move around in one go.
 

Both of these are simple ideas that may help to reduce anxiety and to relax an ASD child.  If it helps to stop a meltdown or can be used as a calming distraction, it's worth the effort of making them. 

Wednesday, 23 October 2013

Success at the Hairdressers

Our youngest son had his hair washed at the hairdressers tonight which is an amazing step forward, as his hair has not been washed properly for months.  He will put the shampoo onto his hair at home, but then won’t let you wash it off.  It has been a battle of wills where hair washing is concerned and to date I have not won and just been soaked in the process!!
 
Tonight we visited our hairdresser at 6.30pm when the salon was quieter.  It was decided that it would be best to cut his hair first and then wash it so that any pieces of hair that had been cut and were on him could be washed away and he wouldn’t feel itchy.  Our son was engaged in the whole process and shown everything the hairdresser was going to use to cut his hair first.  He enjoyed having his nose tickled by the baby size clippers, so that he knew what to expect when she did his hair.  After his hair had been cut, we went upstairs to the ladies part of the salon.  He was covered in towels so that no water could reach his clothes and then placed on a huge booster cushion so that he could reach the basin and he gingerly put his head back to have his hair washed.  He grasped my hand tightly and looked up to the ceiling whilst a miniscule amount of water was put onto his head.  As he became reassured that the water was not going to touch his face, the hairdresser gradually wet more of his hair and then let him smell the shampoo she was going to use.  He enjoyed the sensory input of being able to smell the strong mint scent in advance of it being placed on his hair and the firm pressure of a mini head massage helped to reduce his anxiety.  When the time came for his hair to be towel dryed, we quickly reminded him to keep his eyes looking at the ceiling, so that the water didn’t trickle down his face and leave him with a lasting memory of getting wet.
He has come away feeling happy about the whole process and wants to have his hair washed again. 

Monday, 21 October 2013

Halloween is not for everyone

We have spent the last few years during the evening of 31 October sitting in the dark with no tv on and not being allowed to make a noise as our two ASD children do not like the unknown quantity of Halloween.  Costumes can terrify them and many ASD children do not like dressing up themselves, then our children worry if the treats you give out are not seen as being good enough, a trick will be carried out.  Plus their lives are governed by rules and abiding by them.  One rule that all parents teach children is not to talk to strangers, therefore to explain to an ASD child who sees everything in black and white that it is ok to knock on the door of a stranger and ask for sweets goes against everything they have ever been taught.  Even as a parent, I am not happy with letting them do that, so I can only guess how confusing it must seem to them.  They also struggle to understand why you would open the door and speak to someone you do not know.
 
We are lucky that we do not live on a busy road and so there are generally only a handful of trick or treaters that knock at the door.  Our children have already said that the door is not to be opened on Halloween and we will respect that.
To help to prepare our children for the Halloween items that they will see hanging up in houses or in the shops, I have made a sensory bin that is full of stretchy skeletons, squishy eyeballs, pumpkin tinsel and spiders, mixed together with rice and lentils.   
 
Preparation is the key to everything when you have a child with ASD.

Monday, 14 October 2013

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. 

Thursday, 10 October 2013

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. 

Saturday, 5 October 2013

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

Thursday, 3 October 2013

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.

Tuesday, 1 October 2013

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!!



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

Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
 
 
 
 
 
 
 
 
 
 
 
 
 
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.