Sunday, 3 April 2016

Life Changing Experience

13 days ago I wrote a blog just before I had to leave home for day surgery but didn’t have time to post it so thought, I would do it the next day.  Unfortunately, things didn’t turn out as I had planned and I was rushed back into hospital the next night by ambulance and then spent 8 days in hospital. 

A friend wrote the following quote as a facebook post last weekend after visiting me in hospital and it sums up how the last 13 days have been:

Scary how in the blink of an eye your whole life can change.. Love and appreciate what you have and if you don’t, then do something about it.  Life is short and very fragile…

I have only got through the past couple of weeks with support from family and friends.  Being told that all operations were being cancelled, so that I could go down to theatre is probably the most frightening experience in my life and I keep reliving that moment over and over again in my head.  However, as the quote above suggests, I need to move on from that and enjoy what I have in life, as the past couple of weeks has shown me how precious life is.  I’m very lucky to have such wonderful family and friends who have rallied round us as a family and offered ongoing support for us.  At the moment I have 8 weeks expected recovery time, but I also have an appointment with a consultant in 4 weeks time to see if I need further surgery.  Currently, just getting up and having a shower is wiping me out.  I’m also not allowed to lift anything for 8 weeks and for anyone who knows me will realise I’m going to find it hard to restrict what I do for that length of time as I’m an active person by nature and rarely sit down and do nothing!!  The day before my original day surgery I clocked up 17,000 steps and I think I’ll be lucky if I manage that in the next month or so.  

There have been some positives to come out of this experience – I’ve lost 8lbs in weight as was nil by mouth for the majority of my stay in hospital!  After dreaming of my Easter Egg that was at home waiting for me, I’ve yet to touch it, as I’m not overly hungry, but I’m sure that will change in time.  The best thing to happen though is how our three kids have risen to the challenge that has been thrown at them.  It is hard for our two ASD children to have their routine changed without warning, but they have coped in their own ways - being hooked to the iPad watching the same cartoons or hibernating in their room.  They have also learnt that Daddy is able to help them like Mummy can and they can now go to both of us for support, rather than relying on me, as I'm generally the one at home whilst Daddy is at work.  Our daughter who rarely shows any empathy sent me so many text messages to say how much she missed me and wanted me to be back home, as well as making me lots of get well cards.  She found it hard to visit me in hospital, as did our youngest son, as it wasn’t the most pleasant environment for them.  For five days I was on a ward for hip replacement patients, as the it was only ward that had a spare bed and I was the youngest by 30 years.  It was total sensory overload for our youngest son, as a hospital ward is not an environment he has ever had to come up against before and with all the machinery, noises, patients calling out etc, it was too much for him to cope with.  Our eldest son has showered my in hugs and kisses and has become my protector.  To keep them occupied they have all learnt new skills and are helping out at home.  Our two eldest children both know how to use the washing machine and dishwasher and all three of them are willing to do extra chores and pull together as a family.  As I can’t bend down at the moment, our youngest son is picking up everything in sight with a grabber tool and it’s become his new toy. I’m so proud of the three of them and although I wouldn’t want them to have gone through this experience, I think it has made us stronger as a family.

Wednesday, 17 February 2016

Joy of DLA Form

A forty page document arrived in this post this week – our youngest son’s renewal form for his Disability Living Allowance (DLA).  It is three years since I filled in the last application and even though this will be the third time I’ve completed it for him, it doesn’t get any easier.  Each time, the form changes and requires several hours of work to fill it in.  I won’t start it this week with it being half term, as I need peace and quiet so I can work my way through it.  It is going to be a bumper size envelope that I return with copies of his Statement, SEND Support Plan, reports from his OT and Autism Advisory Teacher etc.  It will be a relief once the form has been filled in and sent off and something else to tick off my huge to do list!

Wednesday, 6 January 2016

New Year Goals

As the end of the first week approaches of the New Year, our children have made their wish lists for the year of places they want to visit and things they want to achieve.  They are long lists, but we have already been able to tick one place off the list with a visit to Woburn Safari Park that we did on New Year’s Day, so we are off to a good start. We’ve even booked two holidays for the summer so we all have something to look forward to.

The biggest thing that our two oldest children are working towards is a saving plan so that by the end of the year they will have £137.80 to spend.  Our daughter will be in ‘Zoella Heaven’ in December if she has that much money to use on her beauty products!!

Everywhere on facebook over the past week or so, I’ve seen different saving charts so that if you save a penny a day and then add an extra penny the next etc, you will have £667 by the end of the year.  These are great for adults, but too much for our kids to aspire to when they get £2 pocket money a week.  So I found a plan that was geared towards children and our daughter and eldest son are determined to reach the end of year target.  They won’t be able to save it all by just using their pocket money, so currently they are keen to do extra jobs round the house to earn some money, they are looking to see if they have anything they can sell and I’m sure they will be able to use their puppy dog eyes to win over family members at different points in the year!!

It will be a competitive thing between the pair of them as once our daughter has set herself a goal, she will go all out to achieve it and I guarantee she will want to reach the target before her brother does.  Although he will rise to the challenge and I think the competitive nature of the pair of them will ensure that they do reach their end goal.

If your kids are interested in following the same savings plan, this is what they need to save each month.

January        £1
February      £2.60
March          £5.50
April            £6.20
May             £7.80
June            £12
July             £11.40
August        £16.50
September  £15
October      £16.60
November  £23
December  £20.20

Total £137.80



Monday, 21 December 2015

Four Sleeps until Christmas

This is a stressful time in our ASD household.  Christmas brings so much change to normal daily routine with a Christmas tree being put up, Christmas activities at school, presents, family and friends coming to visit over Christmas, sensory overload caused by bright lights, music on high volume when out shopping etc.

Our youngest son’s life revolves around how many sleeps until the weekend, holidays, particular event etc.  This year is the first year he has associated a chocolate advent calendar with the countdown to Christmas and it has confused him, as the doors are opened according to the date it is in December, rather than how many sleeps like the countdown charts we use at home.  Next year, we will have to open up the doors in reverse order, so that we can arrive at number 1 on Christmas Eve and not 24.

December is always a busy month for our daughter and in the space of five days she performed twice in the school panto, sang in London with the school choir and performed at the Indigo Theatre at the O2 with her drama group.  She is driven by her goals and last week seemed a bit flat in comparison to the highs she experienced performing the previous week.  To compensate it, she has now written herself a bucket list for the Christmas holidays to ensure she reaches some new goals.

Our Christmas tree went up when the kids packed up school.  So far so good and it is still standing upright.  It will come down soon after Christmas, as our youngest son will not tolerate it being up in the living room for too long.  At the other extreme, our daughter has had a tree up in her room since the end of November and if this year is anything to go by, it is not likely to come down before Easter.  She finds it to be a useful deterrent to keep her youngest brother out of her bedroom as he doesn’t like looking at it.

We continue to not wrap up presents for our youngest son, as if we do, it causes him too much anxiety.  He likes to be able to see what he is receiving, rather than getting a surprise.  If it means he is happier and more likely to play with his toys, then it’s the best thing to do for him.  We do the same on his birthday as well and makes the day run a lot smoother than it used to.  We also spread presents over a few days, as otherwise our youngest son is overwhelmed.  Our other children are quite happy with this arrangement as it means the magic of Christmas goes on for longer.

To cope with sensory overload caused by the change that Christmas brings, our youngest son has been engaging in lots of sensory activities and watching the same DVDs over and over again.  I’ve lost count of the number of times I’ve heard him sing Hakuna Matata from Lion King in the past couple of weeks and how many times he has watched Curious George.  He always returns to old favourites when he’s anxious and has been spending some of his time acting out being a monkey or lion with the relevant sound effects. 

The next few days will remain quiet in our house, so that our youngest son can cope with Christmas.  To ensure our eldest son gets some time to release his energy, as he wants to be out and about, he is doing a two day rugby training course at Saracens from tomorrow.   Our daughter is working through her bucket list, so she is happy as well.

Christmas is probably a quieter event in our household compared to most, but as long as all three of our kids are happy, then we are happy.   We don’t conform to what is expected of Christmas, instead we do what works for us as a family.

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.