Monday, 21 July 2014

West End Star

Our daughter performed in the West End last night with her drama group for the third year running at Her Majesty's Theatre on the Haymarket. It is the highlight of her year and she shone on the stage. Each year her confidence grows and tears well up as I watch her with so much pride. She struggles with so many things in life due to her ASD and the social communication difficulties she has, but put her on stage and she transforms. It helps that she is looking out into a sea of blackness so she can't see the hundreds of people watching. As parents it's wonderful for us to see her enjoy her passion in life. 

Thursday, 17 July 2014

Sports Day

Some children like our neurotypical son thrive on activities such as sports day and love being able to take part.

Our youngest son struggled with his sports day last month as he didn’t like the fact that parents were watching their children.  He doesn’t like being the centre of attention and he refused to take part in his race or join in with anything else until he found a quiet area of the field where he felt no one was watching him.

Last night our daughter was sobbing her heart out as she didn’t want to take part in sports day.  At her middle school they operate a ‘house’ system and she was worrying that she would let her ‘house’ down, as in her eyes she is not very good at long jump, the event she had chosen to take part in, so she wouldn’t score any points.  We tried to reassure her that as long as she took part and did her best, no one could expect anymore from her.  Unfortunately, one of her traits of ASD is to be a perfectionist and unless she feels she is the best at what she does, she is not satisfied with the end result and will tell herself that she is rubbish.   It doesn’t matter how much we try to convince her otherwise, she will not listen to reason. 

This morning she refused to go to school.  I was firm and said that if she didn’t go to school she would miss her dance lesson tonight and this helped to change her mind.   I also told her that she needed to speak to someone and explain how she felt.  I didn’t hold out much hope that she would do this and emailed the learning support staff so that they would look out for her and have a chat. 

To my amazement, I received an email this morning to tell me that our daughter had marched straight up to a member of staff when she arrived at school and told them she wouldn’t be taking part in long jump today.  They have allowed her to just sit and watch as they could see her high levels of anxiety rising as she spoke to them, but have also explained to her that she must believe in herself and that her best at whatever activity she is participating in is all that anyone expects from her.  The goal for Year 7 now is for her to understand this message and then on sports day next year she will feel able to take part without putting on any additional pressure on herself to be the best.

I’m feeling very proud of her though for speaking out and explaining how she felt to someone at school, as this is something she struggles to do.  She hates to ask for help and tries to do everything herself, which is why we have nights like last night when she finally explodes as she can no longer keep her worries to herself.  Hopefully, this is a step forward in her realising that asking for help can be a positive thing to do.

Monday, 30 June 2014

Birthday Celebrations Part 2 for June!


Both of our ASD children celebrate their birthdays in June and this weekend has seen our youngest son turn six.  His birthday celebrations have been drip fed over the past couple of weeks to help reduce his anxiety. We have had a countdown chart for how many sleeps until his birthday party and another one showing how many sleeps until his birthday. He has had a present every couple of days to spread them out as he gets overwhelmed with everything on the actual day. 

Last wednesday he had six friends back from school for a party which had been carefully planned with a visual schedule to show him the order of events with two party games his choice. Towards the end of the party the stress was starting to show and he spent a good hour after everyone had gone home chilling in a quiet place. Then four hours attempting to build the new Lego creations he had been given as presents before he succumbed to sleep.  He had fun though and was the calmest we've seen him at his birthday party, so we are making progress.  The more preparation we do for him, the easier it gets.

We have been lucky that his birthday coincided with a school training day and we took advantage of this and went away for  the weekend to Drayton Manor Theme Park. Our youngest son was very excited at seeing the different trains on each floor of the hotel, but his anxiety surfaced once we were in the restaurant and foyer area of the hotel and he used his own calming methods of clicking his tongue, crawling around like an animal and hiding out of the view of other guests. The park itself proved to be overwhelming with the level of noise and volume of people but he enjoyed seeing Thomas the Tank Engine and going on Percy for a train ride. Once he's tall enough I think he will love the scary upside rides like our other two children as he is a daredevil at heart.  At the moment it is frustrating for him, as he can't do all the rides and so there is a fair amount of waiting time for him whilst his siblings go on rides, which is hard for any child.

The downside of theme parks these days is the number of funfair stalls they have where you can win a soft toy if you get two balls in a tub. With our youngest son's obsession of soft toys this was always going to be a difficult attraction to escape!! He set his heart on a Minion and soft toy 'Thomas' and do you think we could win one?!! We must have spent over £20 trying and his frustration at not understanding why you didn't get a toy after every two throws mounted.  We even asked if we could buy one but was told no, so we resorted to a trip to the toy shop in the theme park and came home with another couple of toys to add to his growing collection!!  

Now the question that all parents dread but our son is already asking 'how many sleeps until christmas?'!!  Only 177 days to go, but I'll be avoiding the countdown chart for that right now.  Instead we will be working towards the school holidays and the anxiety that it can cause with a change to normal daily routine.



Sunday, 29 June 2014

Cheerleading Triumph

We spent last Thursday being surrounded by pom poms and children being thrown in the air and doing the splits. It's a skill I can only dream of having but I'm a proud mum as our daughter has came home with two medals from a school cheerleading competition. One gold and one silver which have boosted her self esteem no end. She can no longer say she is no good at anything as she has two medals to prove otherwise.  I'm hoping this will enhance the CBT work we are doing with her and help her to realise that she is a girl of many talents. 

Sunday, 22 June 2014

100 Days of Happiness Challenge

As part of the CBT work we are doing with our daughter, we have undertaken a 100 Days of Happiness Challenge as a family.  You will probably have seen this on facebook this year where people post a photo every day to show what has made them happy for the day.  Instead of taking photos, we are writing down one happy event each day on a chart and the whole family is taking part.

It is a good way to look back on the simple pleasures in life and is a useful tool to show our ASD children that there are daily positive things to focus on, rather than them homing in on the negative points in life.

We have completed the first week of the challenge and it’s good to see what makes our children happy.  Our eldest son seems to be focussing on his sporting activities, our daughter is happiest when she is doing drama, cheerleading, making loom bands or singing and our youngest son loves being outdoors and active.  My days of happiness so far are centred on being productive and ticking things off my huge to do list (!!) and hearing my kids laugh when they are playing together.  I already realise I need to focus on the latter and appreciate what is already around me, rather than worry about my to do list.

Another 93 days to go with the challenge and I’m hoping it will make us all appreciate the little things in life and make us happier as a family.

Sunday, 15 June 2014

Experience of the Autism Show

Yesterday I visited the Autism Show at the Excel Centre in London for the first time. As you walked into the show you were greeted by the awesome sight of a robot that is being used in schools as therapy for autism http://www.optimusic.com/nao-interactive-robot.  It would be a wonderful concept for the home, if it was more affordable.

A sensory playroom was another attraction of the show with a moving aquarium lighting up a wall and an interactive xylophone on the floor with coloured bubble towers and optic fibres illuminating a darkened area. It had such a calming feel and would be enjoyed by everyone to destress.  I wish we had the space and money (!!) for a room like this at home, as it would be a wonderful retreat for our kids when they feel their anxiety levels rising.  I'm sure I would benefit from it as well!!

My head is still buzzing from the wealth of information that was available and I have come away with so much literature to read and been inspired by talks that I heard. 

Alis Rowe who is an author and creator of the Girl with the Curly Hair Project is 25 years old and was diagnosed as an adult with ASD. She gave a heartfelt talk on the '10 'Curly' Components for Communicating with your ASD Loved Ones'. It was thought provoking and whilst she was talking I could visualise both of my ASD children saying the comments that Alis finds difficult to comprehend when communicating with others.  The message was clear that anyone with ASD needs closure and instead of shrugging off a comment or not giving a concise reason for why something has happened, it is important for someone with ASD to have a definitive answer to stop them worrying.  Without this, they will never find closure and this is why a few months later, we find our children suddenly bringing up a question that we thought had been dealt with, but in their heads, it is still unanswered.  Another important concept which as parents of ASD children we appreciate is the need for visual aids, whether it be pictures or text, as someone with ASD finds face to face interaction overwhelming as there is so much to process in their heads with speech, body language and facial expressions.  Listening to Alis has made me stop and think how as parents we communicate to our children and ways we can adapt it, to lessen their anxiety.

I listened to a talk given by an Occupational Therapist called Nicci Paine who works for Leap Children's Therapy.  She diagnosed both of our ASD children with sensory processing disorder in 2012 and I managed to get the chance to speak to her after her talk to tell her how she has revolutionised the lives of our children from the advice she gave us.  

The only downfall of attending the Autism Show is that today I have felt the comeback from my two ASD children for the fact that I had a day out on my own!! Challenging behaviour has been in full force in our household today and it's been stressful, but as I keep reminding myself, I am entitled to time to myself.  The knowledge that I have gained from attending the Autism Show can only enhance family life.




Tuesday, 10 June 2014

Birthday Fun!

Our daughter celebrated her 11th birthday on sunday and the celebrations got off to a bad start with our youngest son in full meltdown an hour before we were due to pick our daughter up from her drama class on saturday to go out to dinner. He did not want to be in a public place where people might look at him. He generally lives in baseballs caps and hooded tops when we are out these days so that he can avoid looking at people.  Unfortunately, on saturday he got himself into such a state with an hour or more of screaming and throwing things around.  When he has got to this stage, it is best to try and let him calm down and not draw too much attention to him.  He then gets to the point where he asks for bear hugs which always make him feel more secure and happier to do things and once we reached this stage on saturday, we managed to get him into the car. 

Where to go for dinner had already been the subject of a discussion, as our daughter wanted to go to Chiquitos even though she only wanted to eat the churros as dessert. There was nothing on the main course menu that she really liked. We suggested other restaurants but her mind was fixed and no one was going to change it.  Once in the restaurant we managed to get a table in the corner with no one overlooking us. Our youngest son spent the time wanting cuddles, shouting, laying down or hiding under the table. The experience soon overwhelmed our daughter as well as she was in 'loud' mode, but we all managed to survive the meal and have a 'good' time.

On sunday, we went to Linton Zoo as we had bought our daughter a zookeeper experience.  I had already told the staff about her ASD and that she was unlikely to engage in lots of conversation and the staff were fantastic and made it such an enjoyable experience, that our daughter wants to do it again.   She enjoyed being up close with the animals and bathed a giant tortoise, fed it as well as kangaroos, wallabies and lemurs. She also washed down the lemurs sleeping area and was very happy that she wasn't given the job of clearing up any animal poo!! Poo seemed to be a big topic of conversation for our youngest son as he compared the size of animal poo to what he's capable of producing. He tells me he does bigger poos than zebras!! 

Our two sons also got to join in the fun as Linton Zoo run a session twice a day where you can stroke different animals.  They got the chance to touch a baby tortoise, snake, blue tongued lizard, guinea pig and stick insect.

It seems obligatory these days when we go to places that sell soft toys to buy our youngest son one to add to his ever-growing collection.  There must be 50 at the end of his bed but they do help him with his tactile processing difficulties and keep him calm when anxious, as he enjoys stroking them.  He also takes at least one to school each day to help with his anxieties, so they are well used and loved.  In his words' they are my obsession', which is common with children with ASD.  They all have passions that can become obsessive, but they are generally a coping mechanism for them to deal with the stresses that life throws at them.

The weekend ended up being a success and the zookeeper experience was a huge hit.  Now we are on countdown for 'how many sleeps' until our youngest son's birthday at the end of the month.