Friday, 20 November 2015

Saying Goodbye

In her own words, our daughter is doing one of the hardest things she’s had to do in her life today and that is to say goodbye to a lady at school who has been her support network since she started Middle School in September 2012. 

Children with ASD often latch onto one person in the school environment, who they are comfortable to confide in and share their anxieties and concerns with, about things going on at school.  For our daughter, this lady has been that person and although we always knew it was going to be hard when she said goodbye in July next year when she moves up to Upper School, having that day brought forward has been an emotional rollercoaster for our daughter which won’t stop today.   When she walks into school on Monday and realises that this lady is no longer there if she needs to speak to her, reality will set in and we are expecting a difficult few weeks whilst our daughter adjusts to this change.  Fortunately, school are being very supportive and have made 3 Learning Support Assistants available so that our daughter can go and chat to them when she’s struggling with something at school.  Fingers crossed she will do that and not bottle up her frustrations instead.

The positive side of today is that I’ve never seen our daughter up and dressed so early for school!!  She was ready by 6.30am and met her friends outside school at 8.15am as they had permission to decorate this lady’s office.  Sometime this morning, our daughter will have been allowed to leave part of a lesson so that she can say her goodbyes.  School have realised how important this is to her, as she needs to close this chapter in her life, so that she can move onto the next one.  It’s how her ASD brain copes with change.

I’m emotional just thinking about what our daughter is going through today.  She went prepared as wrapped a box of tissues as one of the leaving presents for this lady, as they both know there will be plenty of tears today.  Our daughter will never forget the support this lady has given her and the journey they have gone through.  Back in Year 5, our daughter refused to talk to her and during our first meeting, she sat with a coat over her head, as she was not going to listen to anything she was told.  By Year 6, they had built up a rapport and our daughter would go and ask for help, if something was bothering her at school.  This has continued to develop and our daughter has blossomed in confidence at school with the support she has been given. 

When I read the thank you card and the inside of a personalised notebook our daughter has made for this lady, tears sprung to my eyes, as our daughter rarely shows emotion like this.  We see plenty of tantrums, but not heartfelt emotion and it shows how much of an impact this lady has had on our daughter’s life.  Our daughter has also ensured that this lady never forgets her, as she has turned one of her sweatshirts into a cushion with a beautiful message on the front and she has left the arms in place with the chewed cuffs as a reminder that this lady always knew when she was anxious, as she would take one look at our daughter chewing or unthreading the cuffs and ask what is wrong.

I am hoping that our daughter will realise in time that although this lady has played an important part in her life, she has also given her the stepping stones to success and with all the guidance she has given our daughter, she will be able to get through the remaining months of Year 8 and make the transition to Upper School.  It’s not going to be easy, but I’m confident she will get through it, as once she puts her mind to it, she can conquer anything.

Sunday, 1 November 2015

Our son's passion for rugby

Our eldest son is a huge rugby fan and is now playing in his sixth season for our local club, as well as belonging to the school rugby club.  He watches DVDs of old matches, is always watching games on the TV and reads as much as he can about the sport.  In the house, he generally has a rugby ball in his hand and is trying out various moves.  He is passionate about the sport and on the wall in his classroom this term, he has written a piece about himself saying how he wants to be a professional rugby player, play for his national team and go on a British Lions Tour.  Who knows if he will reach his dream, but he definitely has the drive and passion.

As soon as we knew tickets were going to be released last year for the Rugby World Cup, I registered so that I could apply as soon as possible.  We were lucky to receive tickets in the first ballot for Japan vs. Samoa and New Zealand vs. Namibia.  This summer I bought tickets for the Bronze Final and my husband was lucky enough to get corporate tickets to see France vs. Italy.  It has been an amazing experience for our son to watch eight different nations play rugby and to soak up the atmosphere at three stadiums and enjoy the activities in the Fanzones.  One of the highlights was seeing the All Blacks perform their Haka. The memories that he has from these matches will last him a lifetime and inspire him to reach his goal in life of playing professional rugby.   He even had 5 seconds of fame on the TV as he was captured in the audience.  The smile on his face says it all – it’s been an opportunity of a lifetime for him and one he has thoroughly enjoyed.  If I could have bought tickets to see his nation play - Wales, it would have been the icing on the cake.  However, there’s always the Six Nations, as the next World Cup in Japan is not going to be a possibility!!

As well as being an amazing experience, the time he has spent watching these matches has been respite from the challenges he faces having two siblings with ASD.  It is so important he gets quality time to enjoy his interests without having to worry about if his brother and sister are happy are as well.   He is considerate for their needs and when he turns 11 in three weeks time, he will get us up super early to watch him open up his presents whilst his brother is still asleep, as he knows birthdays cause him high levels of anxiety.

The Rugby World Cup may have finished, but our son’s rugby season has plenty of games left.  Today, I watched him play rugby for the first time this season.  I only watched the last half of the session, as our youngest son finds it too noisy and crowded and doesn’t enjoy attending.  Today he went on the understanding that we would stand at the end of the pitch and not talk to anyone, as he doesn’t like people coming up to him, as he doesn’t know what to say.   I was lucky to see my eldest son score three tries and be awarded the Grafter’s trophy for the match.  Fingers crossed, this will be the first of many games I will watch this season.

Sunday, 18 October 2015

Upper School Application

It seems impossible that our daughter is now beginning her journey to move up to upper school and in a way it is a shame that she needs to get used to another change, as after three years at her middle school, she has come so far and is settled with a small group of friends and thriving in her academic work. 

Although it is an important part of development, for a child with ASD, change causes so much anxiety.  Our daughter has found the past month to be very stressful and the decision of what school to go to has affected her sleeping and eating habits as well as her moods.  She has been able to tell us that she doesn’t want to feel this way, but at the same time, she hasn’t known what was the best decision to make.  Fortunately, the SEND staff at her current school have been fantastic and have supported both us and our daughter.

Last month we began the first of three visits to surrounding upper schools.  We had always envisaged that she would choose the one that is within walking distance of our home.  However, after her initial visit, she came away very unhappy and did not like the environment, in spite of knowing all of her friends would be going there.  We kept an open mind and visited two other schools, as feel it is important to compare what else is on offer.   When she walked into the one that is the furthest away (8 miles from our home), her body language indicated that she had found a new environment that she felt comfortable in.  To me, the school she has finally chosen is a bigger version of the one she is currently in and she had a smile on her face as she walked round the school.  Always a good sign.

During the past week, she went back to visit two of the original choices, so that she could be sure she was making the right decision.  On Friday she came home excited about what she had seen at the school she has now chosen.  She already has an idea of what GCSEs she wants to take and the clubs she wants to participate in.  It is a brave decision from our daughter, as we had thought she would choose the nearest school to be with her friends.  We would have accepted that, as unless she is in an environment where she feels settled, she will never reach her full potential.  Instead, she has opted to go to a school where she will need to get a bus each day and make new friends.  A similar thing happened four years ago, when we made the choice for middle school.  We didn’t select the school in our catchment area as our daughter did not like it nor did we think it was the school best suited for her ASD needs.  However, our daughter also wanted to go somewhere different from her peers in her lower school.  She wanted to start afresh.  Our daughter’s way of coping with change is to go for something completely different and it has worked for her in middle school.  She is a far more confident girl, who knows what she wants out of life and we couldn’t be prouder of what she has achieved so far.

Now that the decision has been made of what upper school to attend and I have completed the online application, we are hoping that until we are notified on 1 March 2016 of what school she has been awarded, calm can resume in our house.  Our daughter already looks happier and is ready to enjoy things again, rather than putting everything on hold until this decision was made.

No doubt next year will cause anxiety levels to rise again, but if she is awarded her chosen school, they have already assured us she can have as many visits as she needs between March and July to get used to the new environment.  With the right preparation in place, our daughter will be able to cope and we will be there to support her on this next stage of her educational journey.

Sunday, 4 October 2015

Seamless Socks

After being able to cope with wearing socks inside out for the past couple of years to help with the irritation that they cause our youngest son, he developed an aversion to wearing socks when he went back to school this term.  The anxiety of getting used to new staff and workload in Year 3 has heightened his sensitivities. After trying a variety of socks, I bought seamless ones from Sensory Smart (  When they arrived I could see there is a noticeable difference in how they feel to a high street bought sock.  There are no ends inside the sock or seam along the toe line.  Unfortunately, they haven't been the overnight success I had hoped, but I think this is down to how anxious our son is about school and the sensory effects it is having on him, rather than the socks not working.

There has been an improvement in how long it takes our son to put his socks on each day.  This has now reduced from 30 minutes to 5 minutes and then they feel comfortable for him to wear.  To aid this process I have also invested in some small massage balls.  Each morning I now massage his feet for a couple of minutes and the spiky edges on the ball and deep pressure used, appears to be helping to desensitise his feet before he puts his socks on.  Another way to help this process is for him to jump up and down for a couple of minutes on some tactile mats/bubble wrap.

Monday, 14 September 2015

1 week down, 6 to go!!

The second week of the new school year has started and we’ve already had lots of tears and tantrums from our two ASD children.  At their request, we are counting down until half term and I am hoping that the next six weeks go as quickly as they did during the summer holidays.

Our youngest son’s life revolves around how many sleeps until the weekend/holidays and it’s the first question he asks when he wakes up each day.  It’s such a shame as he is constantly worrying about what’s ahead, rather than enjoying each day.  His eczema has flared up again and began a week before the start of term.  This is what happened last term when he had a new teacher and for three weeks, his arm looked raw and sore until his anxiety lessoned and then his arm recovered.  We are expecting a similar pattern this time as he has got to get used to the routine of having two new teachers each week, plus a TA teaching one afternoon every other week and other new TAs in the classroom.  One of the stims that always seems to resurface when he’s very stressed is him clicking his tongue.  He is not aware he does it and he does it whilst he’s asleep as well.  Our other children find it an annoying habit to listen to and it does keep my awake at night, but it is his coping mechanism and the more you draw attention to it, the more he will do it.  In time, he will feel happier about his new routines and not feel the need to click his tongue to keep calm.

Our daughter’s oppositional defiant disorder has been very evident, as she does not want to walk to school each day.  As she has now started Year 8 and will move to Upper School next September, we are trying to encourage her to be more independent.  Unfortunately, she doesn’t agree with us and has been doing all she can to avoid walking to school.  I offered an incentive for Friday that a friend could come round after school if she walked that morning and had hoped that would be enough motivation to get her walking to school.  How wrong could I be?  She refused to get out of bed until 8am, the time she needs to leave to walk to school and said she was not going to school, unless she got a lift.  With a lot of persuasive talking, I managed to get her out of the door by 8.30am to walk our youngest son to school.  This caused a lot of stress for our son, as it wasn't part of our normal routine, as his sister doesn't come into his playground.  After dropping him off, I then walked our daughter to her school, which meant she was late and something she hates to be.  I cancelled her friend coming round that day, as she didn’t walk to school on time that morning.  However, with her literal thinking, she argued that she had walked to school, so her friend should be allowed round.  I carried out the consequence for her actions, but I now need to rethink how I word things in the future, so that it can’t be interpreted in any other way.  Over the weekend we have compromised that she will walk to school two mornings a week until half term and then we will look to increase this and she  will walk home every day after school, unless she is there late for a club.

Fingers crossed it will be a calmer week for both of them, but as always a new school year brings lots of change and for our ASD children that means their anxiety levels rocket out of control until they know what to expect with their new routines. 

Friday, 4 September 2015

A Tale of Two Campsites

In the past, we have only been on week long holidays as our ASD children struggle to cope with being away from their normal routine for longer.  This year we decided to try a longer holiday and went camping for 10 days, came home for a couple of days, then went away for another 4 days of camping.

Our first trip was to a wonderful campsite called Crealy Meadows, near Exeter in Devon.  It has first class facilities and I couldn’t fault the toilet and shower blocks. which are always an important factor when camping.  Underfloor heating, huge walk in showers, with room to get changed without your clothes getting wet from the shower and I never queued once in 10 days.  The pitches were large and everyone had their own water tap.  Attached to the campsite, which was the main attraction for our kids was a small theme park, which we could access form a side gate and so avoid queing up with the public.  We were able to go everyday and if we went first thing, we escaped the long queues for the rides and could spend an hour or so in there and then have the day to visit the local seaside towns.  In the evening, the campsite opened up an indoor play area, which included drop slides and obstacle courses.  This was a ready made sensory circuit programme for our youngest son and it tended not to be too busy, as it was just people from the campsite who could visit at that time.  Live entertainment was also put on each night and although initially our kids were not interested, by night six they were asking to go and see ‘Crazy Cameron’ or ‘Cheeky Charlie’, who helped to run the entertainment programme.

The campsite offered a half day ‘Own a Pony’ experience. Our youngest son had asked me to book this for him, but when the day arrived, he decided he wasn’t going to take part.  I encouraged him to at least go and see the ponies and we were lucky as it was only him taking part that day.  The animal keeper was very patient and experienced with ASD children and let him take his time to get used to being around his pony.  Within 20 minutes, he was captivated by being able to groom, walk and feed the pony.  At the end of the session, he asked if he could repeat the experience again.  Every day after that we visited the ponies, so that he could talk to them.

Buying food for our meals was made easier by having a huge Tescos located 5 minutes drive away from the campsite.  Although we like to try local butchers, delicatessens etc when we are in different areas, our ASD children are fussy eaters and so like to be able to buy what they would eat at home.   Being away from home and normal routine is not a moment to ask an ASD child to try new food, unless you want a meltdown to occur.

Weatherwise, our holiday started off well with bright sunshine, but by the middle of the break, the rain set in.  One morning we woke up to find a small lake in the living area of the tent with worms wriggling around.  This caused a meltdown for our daughter as she had not expected to wake up to this – the tent should look as it did when she went to sleep.  Instead of helping us to clear up the mess, she retreated to the car to read her book, which was her way of dealing with the situation.

In spite of the weather, none of the kids wanted to come home early, as they were enjoying themselves and so we managed to have 10 days away.

Exmouth Beach on one of our few sunny days!!

Our second camping trip was a totally different experience – a field in North Wales with basic toilet facilities and no other entertainment other than watching a steam train coming into the station behind the campsite and to watch the cows and sheep in the fields around us.  Pitches were not marked out and the toilets were a portacabin in the field.  Showers were across the road by the farmhouse.  They were all clean but lots of spiders were living in the portacabins, which unnerved the kids and you had to queue.  Three toilets for a field of 80 tents is not enough!!  Although the kids love running around in a field and playing games, they didn’t like tents being so close to one another.  The biggest problem we had to contend with was the location of a decent supermarket being 25 miles away.  Our ASD children struggled to find what they would normally eat in the local shops.  Although we take some food with us, as we camp non electric, there is a limit as to how much we can bring, so that it remains fresh.  

We had a great time visiting the area though and loved climbing the mountains and going on a horse drawn canal boat in Llangollen. 

Glyder Mountains

Both holidays were very different but enjoyable and we've all had the best of both worlds being able to explore the seaside and mountains during the summer holidays.

Thursday, 6 August 2015

Summer Holiday Bucket Lists

On the last day of term all three children wrote their bucket lists for the summer holiday.  We are now nearly at the end of week three and we have achieved so many of their wishes already. 

Some are easier than others to do – our youngest son has the easiest choices with Mr Whippy ice cream as one of his and a small list of 8 things to achieve.  At the other end of the spectrum our daughter wrote a list of 25 things ranging from having her ears pierced, which she did during the first week to staying up to watch all the Harry Potter films back to back and transforming her dolls house into the Weasley home from Harry Potter.  This has yet to be started, but she has a lot of ideas on paper.  She has also set herself targets like she wants to do so much reading a day (half a book a day), be up and dressed by a certain time each day.  Anyone that knows her, knows she likes to lie in and is rarely out of bed before 7.30am on a school day and can be as late as 11am on a weekend, so to say she is going to be out of bed by 9am each day is a task in itself!  So far she has managed it each day, but I have also told her that she can stay in bed longer if we have nothing planned.  However, ASD children always push themselves to do their best and to achieve things, whether they are at school or enjoying their summer holiday.

All three children had written a day out in London on their lists and last Friday we did an open top sightseeing bus tour around London.  It was one of the best days out we have ever done.  They enjoyed learning the history of London and seeing the top tourist attractions.  For our youngest son it was the ideal way for him to see the sights as he didn’t have to walk in the crowds and we had the bus to ourselves for half the journey.

The first three weeks of the holidays seem to have flown by and as well as enjoying days out, the kids have been just as happy to play in the garden or go for a bike ride.  We have four more weeks to tick off everything that is on their bucket lists and fingers crossed we will do this.  At the end of each week, the kids are also writing down what they have enjoyed from that week and I’m sticking it onto a piece of card which I will laminate and we can keep to look back on as their memories for this holiday.