Monday, 26 September 2016

New School Year

Three weeks in to the new school year and life is moving at a fast pace.  Homework for all three children has gone up a level with our eldest two having homework set online which they aren’t necessarily told about and so need to get into the habit of checking, as well as being given work in the classroom.  Our youngest son has six activities he needs to complete by Christmas which seems a long time away, but for him it is a source of major stress, as he struggles with doing anything related to school outside of the classroom.  In his eyes, work related to school should be done at school and not home.  Just getting him to learn spellings, times tables and do reading each week at home is enough for him, so ‘real’ homework is going to take time for him to get used to and accept this is part of his normal routine.

Our eldest son has joined five sports clubs and with two PE lessons a week and his PE coaching lesson, I wish I had the energy to keep up with all his activities.  On top of this he does martial arts outside of school and plays rugby each Sunday.

Settling into upper school for our daughter has been a rollercoaster ride so far, which we expected and we never thought the first few weeks would be easy.  A year ago, our daughter would have refused to get up at 6.10am each day, but for the past three weeks, she has done this every morning for school without any fuss.  Going on the bus and waiting for registration to start, as there’s a 25 minute gap from when she arrives at school until she goes into the classroom has been a big adjustment.  She has moved from being in an environment, where she had a group of friends to meet and chat to every morning, to starting afresh with no friends.  This was her choice and she has made an amazing start making two new friends.  However, their buses arrive later in the morning, so our daughter has struggled with not knowing what to do with herself for 15-20 minutes on her own.  At the end of the second week at school, our daughter spoke to her form tutor to explain how she was feeling and she has been allowed to go straight to the classroom when she arrives at school.  It’s an easy adjustment for school to make and helps to reduce our daughter’s anxiety.  We are so proud that she took the step to speak up and seek help, as generally it takes her months to build up a rapport with a member of staff, so it shows how her confidence is growing and she wants to make this transition work.  There are many lessons she does not enjoy doing, as now at upper school, she is doing taster sessions of new subjects like psychology, sociology, business studies, so that she can choose which GCSE options she wants to take next year.  However, as she knows she will only be studying these for a few months, there is an end in sight and so she has accepted that this is just the timetable she has to do for the time being and soon she will be learning the subjects she chooses to study.  The biggest change that I’ve had to adapt to with her moving to upper school, is that she is able to take her mobile phone into school and so she texts before registration, break and lunch.  Frequently, she tells me she doesn’t want to do a lesson, but I keep my replies consistent, so that she understands there is no choice and once she’s at school, she has to follow the timetable.  If I ignore the texts, I just get multiple ones sent asking the same thing, so it’s best to reply straightaway.

Adjusting to a new school year is hard enough, but at the beginning of term, I was given a date for an operation in October.  I had begun to plan what I needed to do, so that I was organised in time and thought at least the kids will have almost 7 weeks to adapt to school again and they would be in a fixed routine.  Although the kids didn’t know the actual operation date, they knew it would happen at some point this term, as I’ve had at least 7 hospital appointments since my stay in Easter.

Last Tuesday, I received a phone call telling me that my operation has been brought forward to tomorrow.  It has been all systems go for the past week, so that I can organise family to be here for school pick up and drop off and to help at home, as I’m expected to be in hospital for 7 days.  Once I return I have 2-3 months recovery, so I’m not going to be working on full cylinders for quite a while, which is just as hard for me to accept as the kids.  I broke the news to them on Tuesday that I would be going into hospital and due to me already being in hospital earlier this year for 8 days, they are all equally anxious, as a week is a long time to be apart from them.  

Today I have been at hospital for an anaesthetic review as I’m not a straightforward case for a long anaesthetic.  I’ve been told that a team of anaesthetists will be with me in surgery tomorrow, as last time when Plans A and B didn’t work, they had to resort to Plan C.  Tomorrow they will be prepared for every eventuality.  Not sure how well I will sleep tonight, but am looking forward to this time tomorrow when it will all be over and done with and my recovery can begin.

Friday, 2 September 2016

Summer Holidays are nearly over!!

The summer holidays have sped by this year and on Tuesday the kids will be back to school.  It's scary how quick the time has disappeared but we have also done so much in the past 5 1/2 weeks and our bucket lists have been ticked off. 

Notable highlights have been 10 days camping in Devon with only 1 day of rain. After a deluge of rain last year when we went away (we woke up to find a small river in our tent last year!), we've had two holidays this year full of glorious sunshine as not a drop of rain touched us when we went to Bude in May half term. Whilst we were in Devon our youngest son became an animal keeper for the day. It was a wonderful experience where he had the chance to handle creepy crawlies, muck out farm animals and feed deer, wallabies and meerkats. Our eldest son went on a two day rugby training camp with Exeter Chiefs and was unfortunate that the only day of rain we had fell on his first day of training. Five hours in torrential rain followed by that day's wet kit being left in a bag until we got back home to wash it, is not the best combination!! However, he enjoyed himself and can't wait for the rugby season to begin again this weekend.

As well as going away we have had day trips to London to visit the State Rooms at Buckingham Palace and London Zoo. We've met up with friends and had days to chill at home - the kids have found forgotten toys and board games.  Local days out to go blackberry picking and exploring the countryside in hidden gems we've never been to before like Rutland Water have been enjoyable for all.

Our daughter spent a week with our nieces to enjoy some girlie time.  It's the closest she's going to get to having a sister! She's now raring to start her new school next week.  Something I never envisaged myself saying a year ago. Even the early morning starts which aren't her forte don't seem to be worrying her.  I'm sure it won't be all plain sailing but it's a positive start.

Our eldest son will go into Y7 and is looking forward to a year of just him at school. He's always been at school with his sister or younger brother. Now he says he can just be himself for a year and no one's brother when he's at school.  He's going to start 2 new lessons which he's excited about - Performing Arts and PE coaching.

Next week will start the final year for our youngest son at lower school.  This term we will look round what will be his middle school next year.  Fortunately he has been there many times with his sister and brother so is familiar with the building, although the transition to moving there next September is likely to be huge for him but we have a year to prepare him.

Although, this summer holidays is almost over, we are already planning next year's and have a week of glamping booked  and have just found out today we have got tickets for the World Athletics Championship in London next August.  So we are already off to a good start of fun activities to look forward to.  

Friday, 15 July 2016

Rollover Day Success

Our daughter attended two rollover days last week to her new upper school.  After making the decision in October last year to go to a new school without her friends, we were anticipating last week to be difficult and that she would put up a resistance to attending.  She has blown us away with how well she took to both days and she is excited to be starting there in September.  It has been harder to get her to go back to her middle school this week, as she feels she has outgrown it now and can’t wait for the new challenges that uppers school offers.   We know there will be blips in the new term, but to begin on such a high note, is more than we ever expected and will make the summer holidays easier for her, as she won’t be worrying about what lies ahead of her.

Now she can enjoy her final week of middle school with a Prom to attend, trip to Thorpe Park and a celebration assembly.  Next Friday, she will close a chapter on her life which has seen her blossom from a 9 year old girl who wouldn’t say boo to a goose and was very nervous about starting a new school to a 13 year old who knows what she wants from life and she’s determined enough to reach her goals.

The main thing we want her to remember is that the friendships she has made in middle school can be carried forward.  She has a tendency to end friendships when she moves onto pastures new.  We are trying to teach her that it is ok to have friends from different parts of her life and hopefully now she is maturing, she will understand this. 

Thursday, 30 June 2016

We Survived the Month of June!

June is by far the most stressful month in our year with both our ASD children celebrating their birthdays and our youngest son’s annual statement review.

Our daughter said I ruined her birthday as I made her attend a transition visit to her upper school that day.  When she was told about the visit, two days before it took place, there were tears and a refusal to attend.  She expected me to tell school that she didn't have to go due to it being her birthday.  However, she went on the visit and although she says she didn’t enjoy it, we are proud she did the visit.  Retail therapy the following weekend in Oxford Street seemed to make up for the initial bad start to her 13th birthday.  In fairness to our daughter she has matured a lot during the past six months and although she may put up a fight about doing something she doesn’t want to do, she ends up doing it, rather than putting up a continual battle, which is a huge step forward.  She knows she has a difficult few months ahead of her, starting a new school with no friends and unfamiliar staff, but it is a choice she has made to help her cope with this next stage in her life.  Once the last day of term arrives on 22 July, middle school will be part of her history and she will want to swiftly move onto the next chapter.  Life is very black and white for her, but if it works, then it’s the best way forward.  She has made a brave choice and we are very proud of her and know she will succeed.  It will take time and there will be backward steps, but she will get there in the end.

In the middle of this month we attended our youngest son’s annual statement review.  A lot of changes were made to his statement to reflect the progress he has made from when it was first written three years ago when he was in Reception year.   He still requires the same level of support, but he’s now reached a different stage in his education as he makes his way through school life.  The upcoming year is going to be one to prepare him for the transition to middle school he will make next September.  It may be over a year away, but it takes time for our son to understand the changes that are ahead of him and he will need to be given more strategies to add to his ‘toolbox’ to help him cope with what lies ahead of him.   Hopefully, once he sees his sister adapting to her new school, he won’t be so frightened of moving somewhere bigger without a lot of his friends.  He is competitive like his sister and if she can do it, I know he will believe he can too.

This week, our youngest son turned 8.  He has been on countdown for the past three weeks since his sister’s birthday and made his opinion known very strongly that he didn’t want anyone at school to know it was his birthday on the day.  He hates the attention being on him and didn’t want to be asked lots of questions about what presents he had received etc.  Staff made sure no reference was made to it being his birthday and he came home very happy that no one had realised it was his birthday.   He is so different to our daughter who went to school with the biggest badge she could find so that the world knew she was 13 on her birthday.  What works for one child doesn’t always work for another and we are great believers in letting our children guide us with what makes them happy, so that we don’t add to the stress that their ASD presents them with on a daily basis.   Lots of people think it’s strange that we don’t wrap up presents for our youngest son, but he doesn’t like the element of surprise and we would rather he is happy and enjoys his birthday, than we conform to what is expected for a birthday celebration.

Will July turn out to be a quieter month?  Not looking likely at the moment as I’m back in hospital for the day tomorrow with another appointment later in the month and our daughter has two rollover days next week at her new school.  She also has her Prom, school trip to Thorpe Park and Leavers Assembly.  The most important job for July though is all three kids are going to work on their bucket lists for the summer holidays, so that we have lots of fun activities to look forward to during their six weeks off. 

Friday, 20 May 2016

Busy time ahead

It has been a few weeks since I last wrote my blog.  Recovering from being in hospital during the Easter holidays has taken longer than I expected.  In the last month I have had two more hospital appointments and I have another one on Monday and surgery is still a possibility.  There is so much coming up in the next month that I haven't got time to worry about what may happen to me.  

June always tends to be the busiest month in our year with both of our children who have ASD celebrating their birthdays.  Our daughter will become a teenager  in just over 2 weeks and our youngest son will turn 8 at the end of June.  Birthdays do not generally present a problem for our daughter as she plans it so much in advance. Her present list has been written since Christmas and she has an itinerary prepared for a day out shopping in Oxford Street the weekend after her birthday. She wants to buy up the contents of Primark and Lush!!  Unfortunately, her actual birthday will not go to plan, as I've just been made aware this week that her next transition visit to upper school will be on her birthday.  Two days before her birthday she will be made aware of this fact by her Head of Year and myself in a meeting at school.  I can already hear her reaction in my head and know it is not going to be a good one!!  It is not wise to tell her sooner, as it will have a negative impact on the half term holiday and she will have longer to come up with excuses as to why she is not attending.  Her Oppositional Defiant Disorder will kick in as soon as she is made aware of the visit, so school are currently coming up with a list of positive reasons of why she should attend and are doing all they can to ensure her favourite member of staff goes with her to soften the blow.  Whether it works, is another thing.  Watch this space!!

Our youngest son does not cope well with birthdays and we have learnt from experience to go with what he wants to do on the day and not to wrap up his presents, as he will not open them.  He would quite happily leave them unopened for a couple of days, as this has happened in the past.  He does not like surprises and likes to be able to see what he is getting.   A dilemma he has this year is whether he wants anyone to know on the day it is his birthday, as it will be the first time it has fallen on a school day.  He has been lucky up until now that his birthday has either been on a school training day or a weekend.  He doesn't like attention on him, so is unsure whether or not he wants his peers to know it is his birthday and will probably not decide until the day.  He has already asked me to work out when he will next have a birthday on a weekend and unfortunately it is not until he is in Year 7.  It seems a lifetime away to him, as he's only in Year 3 now.

In between both of these birthdays, we have the statement review for our youngest son.  The meeting itself is emotionally draining and the preparation beforehand seems never-ending.  I have already spent hours drafting our parental contribution. It is such an important document and meeting to ensure our son gets the support that he needs for the forthcoming year.

In the midst of this I have been helping our eldest son get ready for a camping trip to the Isle of Wight next week with school.  He will have a fabulous time away, but it will have a knock on effect at home, as our youngest son does not like his routine being changed and so won't like his brother not being here and will probably sleep in his room as he will miss him.  At the same time, he won't accept his brother coming back home again next Friday night, as he will have just got used to the routine of him not being here.  From past experience,  it is likely he may not speak to his brother for a couple of days until he adjusts to him being back home again.  It will be fun and games here in a week's time!!

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!