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.

Friday, 24 April 2015

The World of Harry Potter

Our daughter is a huge Harry Potter fan and has watched all the films over and over again and as a result she can act out lots of the lines.  She’s in the process of reading the sixth book, has done projects for herself on the characters as well as bought lots of Harry Potter memorabilia.  We’ve been to the Harry Potter Studios a couple of years ago and I’ve just booked to go back for another trip in June as a joint birthday treat for our daughter and our youngest son, who is now turning into a big fan as well.  Although it's going to need a lot of preparation work for him, as he doesn't like busy places, crowds, queuing up, which is something you will experience when you go there.  However, with a social story and a sensory rucksack in place, he should be able to cope with the visit.  If not, we are hoping that the Harry Potter shop at the end of the tour will be enough to keep him going to get round the studios.  He has a huge wish list of what he wants to buy!!

This week our daughter has amazed me with her knowledge of the films and made a canvas for her wall, which is filled with quotes from the characters from the films.  She knows which scene and film, the quotes are all from. 

If you have a child who does not enjoy the academic side of life, having an interest or some may say an obsession like this is a healthy way to motivate your child to work.  It can also help them to socially interact, as they will have a topic that they are comfortable to talk about.  Harry Potter gives our daughter a lot of pleasure, whether it’s from watching the films, reading the books or being able to talk about them.  The only downside in her eyes is that she wasn’t born when they cast the first film, as she sees herself as Hermione.

Saturday, 11 April 2015

Easter Holidays

The Easter Holidays have almost finished and it hasn’t been the easiest of holidays for our youngest son.  Having five members of staff teach him in the final two weeks of term, as his teacher had gone on maternity leave and then suffering with anxiety all holiday of what to expect from his new teacher next week has caused him to go into meltdown on and off during the last two weeks.  ASD children like routine and so when it changes, life becomes chaotic and their normal coping mechanisms go out of the window.

We have tried to normalise things by doing activities we know our youngest son will enjoy.  With the weather being so nice, he has been out in the garden using his inline skates, bouncing on the trampoline, perfecting his bat and ball skills and we have been out for walks.  Our big day out was to London to visit the Natural History Museum.  It’s something our son has wanted to do for a long time. Unfortunately he only lasted an hour in the museum as after queuing for half an hour to get inside and finding it very hot and crowded when we entered the museum, it was overwhelming for him.  We saw the big blue whale, which he described as being small!!  He was expecting something a lot larger.  We didn’t get to see the dinosaurs exhibit, apart from the initial skeleton which you see when you walk inside the museum, as an hour long queue was too long for him to contemplate waiting for.  He is a huge dinosaur fan with lots of plastic/glow in the dark models, soft toy dinosaurs and dinosaur puppets and lots of books at home.  However, as soon as he saw the outside of the museum his fascination for the movie, Paddington took over and he was working out what scenes had been shot where.  It’s a film he has watched every day in the holidays and knows most of the lines already and loves to act out the scene where Paddington cleans his ears with a toothbrush. Fortunately he pretends with his fingers, rather than using a real toothbrush!!  

Going back to school on Tuesday is not going to be easy, but hopefully once our son gets back into the routine of a school day and adjusts to a new teacher, life will become calmer again for him.  As hard as it is to watch our son suffer with such high levels of anxiety, change is an important part of life and something he will come up against over and over again.  Learning to deal with change won’t happen overnight, but he will get there in time with lots of support and coping strategies.

Wednesday, 1 April 2015

World Autism Awareness Day

It's World Autism Awareness Day and I've come across a startling fact on the United Nations website.  They estimate 80% of adults with ASD are unemployed across the world. The National Autistic Society (NAS) website states that only 15% of ASD adults are employed in the UK.  This does not make a bright future for our ASD children if things continue this way.

Employers are missing out on an excellent workforce who will pay attention to detail, have logical reasoning, be punctual amongst many other superb qualities. Unfortunately, the social communication barrier and difficulties with adapting to change between ‘neurotypical’ and ASD adults means there is often a lack of support in the workplace for ASD employees.  They may also falter at the recruitment stage, as often an ASD person sees things in black and white, so will literally interpret a job advert.  If they can’t read between the lines, they may not realise that they are capable of doing the job and so will not apply for the position.  During an interview, an ASD candidate may struggle to answer questions if they are open ended, as they won’t understand what is expected of them.  They may avoid eye contact, which some people may construe as an applicant being rude and they may not be able to interpret body language.  The NAS website has an excellent handout for employers on how to adapt the recruitment process and to manage ASD employees on a daily basis and is something that all employers would benefit from reading, as well as schools/places for higher education, so that they can help to prepare our children for the path of employment.

Education is the key to the development of our future workforce. Maybe it's time our children were taught about autism at school. From personal experience of our three children, I am not aware that the subject of autism is touched on in the classroom.  It is unfortunate that World Autism Awareness Day generally falls in the Easter Holidays and so schools don’t often highlight the day by fundraising or awareness.

Our daughter has been in a class with another boy who has autism for the past 3 years.  Neither of them were aware that the other one had ASD.  They are both at differing ends of the spectrum and accept one another for who they are, rather than questioning what others may describe as quirky, eccentric or rude to name a few descriptors, which our daughter has been called in class.  If all children were made aware of invisible disabilities they would learn to embrace everyone for whom they are rather than stereotyping them, which then continues into how people perceive others in adulthood.

Our ASD children are intelligent individuals who deserve to do as well as everyone else in their generation.  They have the determination to succeed, but need the world to accept them for who they are.  Adapting the workplace to suit their requirements is no different from schools adjusting the classroom and how they work in it, to meet their needs. 

As a family we do not see autism as a disability.  Instead it is a gift – our two ASD children may see the world in a different way from our ‘neurotypical’ son, but it doesn’t make it the wrong way.  By maximizing their strengths, they will all succeed in life and reach their true potential.  We can’t ask for anymore as parents.