Wednesday, 26 February 2014

My Shining Rugby Star

Our eldest son played with his school rugby team in the area finals today. It was an opportunity for me to watch him play, as each Sunday I only get to hear what has happened when he plays with his rugby club, rather than see him in action. Our 2 ASD children do not like being out in the wet and cold weather and standing on muddy ground to support him.  Our youngest son also finds it too busy with all the families watching their kids and doesn't like people coming up to speak to him. As my husband is the team coach we can't share the joy of watching our son. 

Today I had the freedom to watch our eldest son play and it was wonderful to be able to cheer him on with his team mates. They played against 4 teams and finished the tournament as overall champions. I couldn't be prouder of the way that they all played and the team spirit they showed, cheering for the referee after each game. They will now play in the Winter Games next week representing East Beds in the rugby competition. 

To celebrate our son's success we will go out tonight as a family for a meal. It's going to be difficult as we haven't prepared our two ASD children for this change to the normal after school routine, but sometimes we have to be spontaneous as our eldest son deserves to be praised and enjoy the moment of today. 

We will need to go prepared and for our youngest son we will take a hooded top for him to shield himself from visual and auditory distractions. Our daughter will struggle with congratulating her brother as in 'her world' she has to be the best and her siblings can't be good in something even if it's a sport that she doesn't take part in. Her negative thinking will kick in, but we have CBT techniques we can use to help her and fortunately for us a parcel has arrived in the post today addressed to her from Nanny which will give her something positive to focus on.

This day belongs to our son and his team mates for a brilliant display of rugby. He often tries to hide his success as he is sensitive to his siblings' needs and feelings, but he deserves to be spoilt tonight.  I think he will like the trophy I have had engraved for him to mark his achievement for today.

Saturday, 22 February 2014

A Star in the Making

Our daughter performed in 2 shows today with her drama and street dance groups. It is amazing the transformation she goes through being on stage. She oozed confidence and there were tears of joy in my eyes when she sang a solo line in one of the acts. She hadn't prepared us for that and I was overcome with pride. She has so much belief in herself when on stage and now needs to transfer that positive thinking to life in general. We are working on that with the cognitive behaviour therapy (CBT) we are doing and in time she will realise that she is as big a star in everyday life as she is on the stage. 

Thursday, 20 February 2014


During the holidays when routines change we notice that our youngest son shows more stimming behaviour.  This is a repetitive action that is used to reduce anxiety, help calm and cope with sensory experiences. It is known medically as ‘self stimulatory behaviour’.  Examples of stimming include:

  • Clicking the tongue
  • Hand flapping
  • Humming
  • Making repetitive noises
  • Rocking back and forth
  • Spinning around
  • Watching a dvd/listening to the same song on a loop

Some people may consider these examples to be classic autistic traits and they often appear more unacceptable to the general public than if someone is chewing the end of their pen, which is also a stimming action. 

Our experience of ASD is that our children tend to have an all or nothing approach to life, so when they use stimming behaviour, it is very intense and can last a long time, as they need to be able to cope with whatever situation they are in or relax after a day at school.  Lots of children with ASD hold in all their emotions whilst they are at school and so when they come home, they vent their frustration on their loved ones, as this is where they feel most comfortable.  This can be seen in the form of a meltdown or some children may choose to use a stimming action to reduce their anxiety.  Our children frequently use both options, but when they choose to stim, our daughter will rock on a wicker rocking chair and sing the same song over and over again.  Whereas, our son will make animal noises, spin around, hand flap or watch a dvd on a loop for hours until he is calm enough to join in again. 

We often get odd looks when we are out and about and our children are stimming, but we have learnt to ignore this.  It is far more important that our children can enjoy life to the full and if this means they receive strange looks from passers-by because they are flapping their hands or humming loudly, then so be it.

Thursday, 13 February 2014

Mystery of Valentine's Day

Our daughter is stressing about the fact tomorrow is Valentine’s Day as she thinks she will get no cards. Although she has sent one!  Children with ASD can struggle with making friends, let alone having to worry at the age of 10 if they conform with their peer group and have a 'boy/girlfriend'.

Apparently, everyone at school has been discussing who they are sending cards to this week and it has increased her anxiety as she doesn't feel able to join in with the discussions. At the age of 10 who wants to admit they might not get a card to their peers. She wishes Valentine’s Day had fallen in half term so that she doesn't have to be confronted with the question tomorrow 'Did you get a Valentine card?'

Unbeknown to her someone has written her a card (it's from a genuine admirer, not us) and it has been hand delivered to me today so that she has it when she wakes up. I can't wait to see the look of surprise and happiness on her face when she wakes up in the morning. It will make her day knowing that someone cared enough to send a card and she can honestly tell her peers that she did receive one, rather than feel she needs to shy away from the question.

You know your ASD child is ill when ....

there's an eerie silence indoors and no one is bouncing off the walls. Or in our case only one child out of 2 who have ASD are running on full cylinders. For some it may be a relief to have a child that is constantly on the go, zonked out on the floor but I have to say I've missed the energy of our 5 year old.

He's been struck down with a high temperature since Sunday night and is now on antibiotics for tonsillitis. He was not impressed with his medicine as instead of the normal yellow coloured one, he was given pink medicine. He informs me it is girls' medicine so he can't take it!! With some persuasion and incentives he now has two days worth of antibiotics inside him and he has improved today and his cheeky ways are slowly returning. By the weekend he will no doubt be trying to be Spider-Man and I'll be tearing my hair out, but I would much rather have a happy, hyperactive boy who goes into frequent meltdowns than a boy who just flops on the floor.

Monday, 3 February 2014

The Power of Facebook

This morning I commented on a post I read from a friend on Facebook and it proved to be the start of a debate.

The original status was about if it was considered to be offensive for friends to post a status that begins with a sentence like ‘Kids with special needs aren’t weird or odd .…’, as if the people you are posting it to are real friends, they should not look upon your children as being weird or odd.

I commented that unfortunately children with special needs can be referred to as being odd.  Our daughter certainly has experienced this and our youngest son has frequently been described as a naughty boy, when he is having a meltdown in public.  Unfortunately this is down to people’s lack of understanding of ASD and how the manner in which children with ASD portray themselves may come across as rude or naughty, where in fact it is due to them seeing the world in a different way and struggling to cope with the social side of life, as well as their senses being out of sync, which has huge impacts on our two ASD children.

I’m sure many parents share these types of posts on Facebook as they feel it will raise awareness of a particular disability or illness or if they are feeling low as a result of how someone has judged their child, they may post it in a moment of frustration.  I may well have been guilty of doing this in the past.  However, Facebook allows us to do this and nobody should feel guilty for posting something they feel strongly about.  All that we have to remember is the power of Facebook, which may be seen as positive or negative, means that depending upon privacy settings, your post could be seen around the world or just by your close friends. 

One of the reasons I started this blog is so that I can raise awareness of ASD and give an insight into our family life and how we are helping our children to face the challenges that life presents them.  This includes our ‘neurotypical’ son as well as our two ASD children, as he also has to deal with the stigma of having two siblings that have special needs.  At the young age of 9, he already understands that if his siblings are struggling to cope at a particular time, it may mean that he can’t have a friend over, as that will be too much for them to deal with as well.   He accepts this and is given the opportunity to do activities for him, such as his passion of rugby, as well as enjoying things as a family.  He has developed a wonderful set of characteristics as a result of his siblings - he is tolerant of differences, he is sensitive to their needs and patient.  All of these are fantastic qualities that will stand him in good stead for the future.

I have been asked why I don’t write about the negative things in our life, but my aim for this blog is to be positive.  If you dwell on the negatives, you would never see the wonderful things that our kids achieve.  Life isn’t always easy, but our children are special and if I can do something to ensure they live life to the full and reach their potential, I will do whatever it takes to achieve this.  With this in mind, I see Facebook as a positive force by helping to raise awareness through my blog of ASD and hope that something I have written that has worked for our children helps another family.

Sunday, 2 February 2014


Following on from my last post, where we are encouraging our daughter to focus on the positive things that happen each day, this week she had her first session in CBT, otherwise known as Cognitive Behaviour Therapy.

CBT looks at how people deal with situations by exploring their thought patterns and how this impacts upon their behaviour and the way they deal with their emotions.  As people with ASD often have low self esteem, we are hoping that this technique will help our daughter realise that she can overcome anything in life and change negative thought patterns.  It is a structured process which is key to working with someone who has ASD.

The first task is to keep a thought diary of how you feel during each waking hour for 7 days.  Much to our daughter's delight, I am joining in and will keep my own thought diary as well. 

CBT will be done over a number of sessions and once the initial thought diary has been done, your CBT Guide will go through various techniques that may help change negative thought patterns and reduce anxiety. 

Our CBT Guide is Sarah Polack.  Contact her via twitter @CBTguide.

Positive Thoughts of the Day

At the beginning of last month I started a new routine with our daughter so that she would end each day by writing down the things that had made her happy. This is to help her focus on the good things in life rather than dwell on the negative points. Each night she has written her thoughts down on a post it note and put them in a box. This weekend we have read all the notes and have made them into a laminated collage.  I think she was shocked that she managed to cover 2 sides of A4 with all her happy thoughts.  People with ASD often focus on the negatives in life and forget about all the good things.

We are going to do this each month to get our daughter into the habit of realising that there is so much going on in her world to be happy about.