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. 

Tuesday, 14 July 2015

Anxiety of Rollover Day

Last Friday was rollover day and all 3 kids approached it with trepidation as none are happy with their choice of teachers for next year. In the case of our neurotypical son, he has just realised he's had a teacher who has had a gentle approach to teaching this year. His new teacher will push him to reach his ability and won't put up with any nonsense which as parents we are happy about. He's not as keen!! 

Our daughter has two form teachers next year and the whole class appear to dislike one of them as he has a reputation for shouting. As Friday isn't one of his teaching days he didn't attend rollover day which has not helped to calm our daughter's fears of what he will be like. For the past two years her form teacher has not taught any subjects and just taken the register and done form time so hopefully next year will be no different. It will be her last year at middle school before she enters a very different world in upper school. After being in a school with 550 pupils, she will leave in a year's time to begin Year 9 with each year group containing 300 children. It's a whole different ballgame and provision is already being put in place at her current school to help with this transition. We've told her to make the most of the upcoming year as it will only increase her confidence.  She has transformed in the last 3 years from a quiet little girl who refused support from anyone to a confident 12 year old who will seek out support. She's even taken on the role of being a big buddy next year to help the new Year 5 students. Something we wouldn't have dreamed she would have contemplated even a year ago. Slowly she is beginning to realise she is a talented girl who has a lot to offer to others and with the help of an amazing Inclusion Manager she has blossomed at school.

Our youngest son has the most changes to cope with as he approaches Year 3. He will have two teachers for his class with one teaching 3 days a week and another 2 days a week. It is not an option we would have selected for him but now we have to make sure it works for him. Not knowing what to expect with two teachers who will have different teaching styles is causing him a lot of anxiety already. On top of this he has three new TAs to get used to who will be working with the class and one will meet him in the playground each day and be a backup if his 1:1 is not in school one day. It is a lot of changes for any child to cope with, let alone someone who relies on consistency and routine. Photos have been provided for home of all new staff and a transition booklet will be given for the holidays, so that he knows what will stay the same in Year 3 with pictures of what his new classroom will look like and where his peg etc will be. 

September is probably going to be a stressful month in our house, but we are prepared for that and will be there to support all three children. 

Tuesday, 30 June 2015

Birthday Anxiety

The build up to birthdays in our house seems to cause more anxiety these days than the actual day itself, which is an improvement. 

Our youngest son turned 7 on Sunday and had a wonderful day enjoying the rides at Wicksteed Park.  As the weather was not great when we arrived, not many people had decided to visit for the day and so there were no queues for the rides.  Not having his presents wrapped up, which people still find odd, but it makes him so much happier, helps to make the day run smoother. 

We ended up giving our main present to him last Friday to try and reduce some of the anxiety he suffered in the week before his birthday.  Unfortunately it wasn’t enough to stop the meltdowns that followed all day Friday and Saturday, but for the odd hour that he was calm on those days, he enjoyed going out on his new wiggle scooter.  It seems to be a terrific form of exercise and will help with his sensory processing difficulties.  I have yet to master the art of getting it to move forward, but he has already become a speed demon on it!

Our son has now started to ask about his 8th birthday – it will be the first time since he has been at school that it has fallen on a school day.  Up until now, he has been lucky that his birthday has been either a school training day or weekend.  Next year it will be on a Tuesday and he’s not sure how he will cope as he hates to be the centre of attention.  We have told him that we will think about this next June, but he is already asking how many sleeps until his birthday!! 

To us it seems a small thing that is a long while in the future, so we can put it to the back of our minds until nearer the time.  Our son struggles to do this and although he is using different coping strategies to deal with situations in life, learning to cope with anxiety is a difficult thing to master.  One way to describe his brain is that it is like an open filing cabinet and no file is ever closed.  Instead, he keeps the files open all the time and so the thoughts keep whirring round in his mind increasing his anxiety, rather than being able to close a file and return to it at a later date.  As he grows older, he will hopefully find a way that suits him to deal with anxiety.  In the meantime, we just need to be there to support him and if he asks the same question over and over again, it’s not because he’s forgotten the answer, but instead because he needs that constant reassurance and that is how he copes at the moment. 

Wednesday, 17 June 2015

Busy Busy Busy!!!

It feels ages since I last sat down and wrote my blog.  I’ve come to the conclusion that June is the busiest month of the year for us as a family.  Both of our ASD children celebrate their birthdays this month.  Our daughter turned 12 last week and our youngest son turns 7 at the end of next week.  So much preparation is involved in making their birthdays a success and not a stressful day for them both. 

As they are both huge fans of Harry Potter, we are taking them to the Harry Potter Studios this weekend as a birthday treat.  Our daughter has been before with us and knows what to expect, but our youngest son has never wanted to go due to the crowds and queueing.  I have prepared him for the day with a social story and we will take a rucksack full of sensory toys/equipment to help him to feel less anxious.  There’s no guarantees it will work but it’s better to be prepared than just wing it on the day!!

On top of this, our youngest son had scarlet fever at the beginning of the month and was poorly for 10 days.  Then yesterday my husband and I attended his Statement Review meeting, which lasted 3 hours and was emotionally draining for us both.  I had already spent hours writing the parental contribution for the meeting and going through all the reports from the various professionals involved. 

I have also been involved with helping with our youngest son’s school PTA with their fete last Saturday and Fathers Day Sales this week.  Although I thrive on being busy, even I am beginning to feel the effects of such a busy month and need some downtime.  It’s not likely to come before July as we are now on countdown to how many sleeps until our youngest son’s birthday (another 11 to go!!) and in between that he has a Victorian dress up day at school which is causing anxiety as it’s not a normal day, then Sports Day and a school trip all to happen this month.  Roll on July.  The summer holidays will seem a breeze compared to this!!

Monday, 1 June 2015


This is a new phrase that I learnt about on Friday after our youngest son had an eyetest at the opticians.  Photophobia means you are sensitive to bright lights, which for our son is made worse by his hayfever, asthma and eczema.  

During his appointment he spent most of the time rubbing his eyes or blinking and it has now been recommended that he wears polarised sunglasses when out and about.  Inside, he often asks for lights to be turned off or to have the blinds closed.  If your child has a sensitivity to bright lights it maybe worth investing in a sensory den/pop up tent or let them make a den under the table so that they can shield themselves from the light.  This is a popular activity for our son.

Sunday, 17 May 2015

Special Needs Day at London Zoo

Yesterday I visited London Zoo with my youngest son to attend their Special Needs Day.  It is the first time we have been and it was well worth the experience.

The general public are still allowed into the zoo, but the majority of guests appeared to be families of children with disabilities.  Tickets which we ordered online were at a discounted rate.  There was a separate entrance with no queues and by 10.30am we were looking at the animals.  More staff were working to assist visitors, as well as different activities available and lots of areas where families could chill out.  We did wildlife gardening and made a mini beast hotel for our garden as well as planted a seed.  There were art activities, ‘Singing Hands’ demonstration, sensory storytelling and many of the animal enclosure talks were done in sign language as well.  

We spent 6 ½ hours walking around the zoo as my son was mesmorised by the animals.  The gorillas were a huge hit – there were four adult gorillas and a newborn and we were lucky to see them outside on two occasions moving around and interacting with one another.  Tigers, giraffes, camels, zebras and penguins were also popular with my son.  He was captivated by the reptile house and aquarium.  The iconic Elephant House which I remember from my childhood is still part of the zoo, but the elephants all now live at Whipsnade Zoo.  Inside the Elephant House are smaller animals like meerkats, prairie dogs and the sleeping areas of bearded pigs and tapirs. 

It is not possible for us to visit a zoo and not buy a soft toy – it has become an obligatory item to live at the end of my son’s bed!!  Yesterday it had to be a gorilla, which he cuddled all night and has now made friends with an orangutan and chimpanzee that also live at the end of his bed, along with another 50 or so soft toys.

It seemed busy in the park, but once we left, we realised we had actually been in a quiet park of London in comparison to the walk back to Camden Town tube station along the canal towpath.  It is only 10 minutes away from the zoo, but it was so crowded that it became a little overwhelming for my son and he ensured his hood was up, head looking down at the floor and a tight grasp of my hand. 

As well as being a fabulous day out visiting somewhere that has fond memories for me from my childhood, it was lovely to have some 1:1 time with my son and for him to enjoy one of his interests.

Whipsnade Zoo are holding a Special Needs Day on 13 June 2015 and I would recommend going.  We are definitely going to go back to this event at London Zoo next year.

Wednesday, 13 May 2015

School Trip to Normandy

Our daughter goes to Normandy with her school on Monday. She signed herself up for it last year, as she wanted to go abroad for the first time. I have full admiration for her wanting to try new experiences, as she knows she will suffer with high anxiety each time but it doesn't put her off.

At a meeting at school recently, we were advised that the school will be travelling on the Eurotunnel rather than a ferry.  This news has reduced some anxiety as one of her brothers has been telling her that the ferry will sink like the Titanic, so she’s been googling ferry disasters for awhile.  When there’s only 17 months between our two oldest children, there can be a lot of sibling rivalry/teasing.   This can be a recipe for disaster when you have an ASD child who is literal in their interpretation of what they are told each day.

Our daughter’s suitcase has been packed for 3 weeks with room for food as school are allowing her to take her own supplies, as she's such a fussy eater. At the moment she loves to eat a lemon each day and she's got the trip organiser to agree she can take a supply of lemons with her. I've tried to convince her that the hotel they are staying in will probably have some and she will be able to buy them on a trip to a local market but only ‘Aldi’ lemons will do!  I’ve drawn the line at her taking a lettuce with her – she can eat a whole one each day!

The hotel looks fantastic that they are staying in and is situated alongside a beach. Room allocation has been tricky and school has been very accommodating. However, disaster has struck this week, as our daughter is no longer talking to one of the girls who will be in her room. Friendships are so tricky anyway for girls at this age and when you add ASD into the equation the problems multiply.  To be fair she has taken it in her stride, as she lives in a black and white world, so she will stay in the room and not talk to the other girl.  She doesn’t see there will be a problem with this. It’s me as a mum who worries more!!

The hardest part of the trip though will be waking our daughter up to get on the coach as the children have to be at school at 3.45am. Our daughter is no early bird!!  She’s normally waking up at 7.45am to be ready to leave for school by 8.20am.  I’ve already told her she’s sleeping in her clothes to save time and hopefully make the wake up process less stressful.

The five days away will go quickly, as school has filled them with back to back activities.  In one way, this is good as our daughter already knows what the routine will be and has memorised what she is doing each day and at what time.  We’ve been emailed links to all of the places she will be visiting and she has familiarised herself with where they are going.  The downside is that she won’t get much time to chill on her own like she does at home.  An action plan has been put in place for her to talk to staff if she is feeling anxious or something has upset her.  Whether she decides to use the strategies is another matter, but it’s good that school are doing all they can to help her.

I’m expecting a daughter who is like a tightly sprung coil to return and sometime over the bank holiday weekend she will explode.  I’m hoping I’m proved wrong and if something causes her anxiety whilst she is away, she will speak to a member of staff or a friend.  If not, I know what to expect after other similar trips and as long as we give her space to chill out upon her return, she will hopefully settle back into a normal routine before long.  Preparation is always the key to things going right or wrong and fingers crossed we’ve done as much as we can.