Tuesday, 9 December 2014

Tis the season to be tired, ill and stressed!!

Don’t get me wrong I love Christmas and have since I was a child, but unfortunately this time of year no longer seems to agree with our family.  For the past few years, I have crashed at this point due to a build up of viruses taking their toll on my body.  This year, it is the turn of our youngest son, who has been on a nebuliser twice since Thursday, is now starting his second lot of antibiotics and appears to be in a constant state of anxiety.

Things that he can normally cope with doing like going to have his hair cut are causing him a heightened level of stress.  He is digging his heels in far more often than normal about not wanting to do things.  In his words, ‘life is not normal’ and he wants things to resume a normal pattern as soon as possible. 

Fortunately, the stress of performing in his class Christmas play has been removed this year and instead of rehearsing he has been doing a project on pets, which he is enjoying due to the recent arrival of our puppy, Ludo. 

Putting up our Christmas tree has not been discussed yet – it doesn’t normally occur until the kids have begun the school holidays, but with Ludo chewing everything in sight, it is unlikely that a tree will go up this year.  I don’t think I can take the stress of removing an ornament/tree branch from Ludo’s mouth every few seconds of the day!  We may compromise and have a small tree on the large bay window sill we have in the living room, so that our other two children are happy that something is up.  They are concerned there will be nothing for their presents to be put under!!  Our daughter has had a Christmas tree in her bedroom since the end of November and is a good way to ensure her youngest brother does not enter her room.

Visually, our youngest son is getting a lot of pleasure from the Christmas lights that are being adorned on people’s homes and loves to take a drive in the dark to see the lights.  It would be a different story if they were in our home, as he would not like the change to the outside of our house, but he is happy to see other houses lit up, which is a step forward.

Each year we will make small steps like this and although we may not have a conventional family Christmas – we don’t have people visit over Christmas, our youngest son prefers not to have his presents wrapped up, presents are spread over a few days, rather than all being given on Christmas Day, Christmas dinner will consist of whatever everyone will eat, rather than conforming to turkey – we are happy and slowly building up our own family Christmas traditions.  As long as our three children have a smile on their faces and enjoy Christmas in their way, we can’t ask for more as parents.  

Do what works for you as a family, rather than doing what you think the world expects you to do.

Monday, 1 December 2014

The Lego Show

A birthday treat for our eldest son was a trip to the Lego Show on Saturday at the Excel Centre in London.  It is rare for me to spend a whole day with him, as like many families with special needs children, we have limited people we can call on to babysit.  Therefore, we have to juggle the activities of all three kids and find some time where either my husband or I can take one child out on their own for some quality time.  We feel it is important to have 1:1 time with each child, as well as spending time together as a family.

Saturday gave our eldest son the chance to relax without worrying about the demands of his ASD siblings.  It didn’t matter that the train and tubes were busy, as he could cope with standing up and being in close proximity to others.  Queuing for 45 minutes to get inside the Lego Show (and that’s with tickets that we had already bought!!) didn’t faze him, as he was happy to chat to pass the time.  When we had finished in the show, we decided to be spontaneous and go sightseeing.  These may all seem little things, but they are not easy to achieve when we all go out as a family as we need to prepare our ASD children for what we will do during the day.  From a sensory perspective, a day at the Lego show could cause them sensory overload with the volume of people, noise, people brushing past them in queues, visual distractions etc. 

After a day of looking at fantastic Lego constructions and seeing what was on offer at the various stands, our son came away very happy with his Ninjago Lego kits and Lego Xbox games.  I had hoped to buy some Harry Potter Lego, as it’s hard to come by these days.  I thought I had hit jackpot when I found a small box on a stand with Harry Potter and Draco Malfoy figures on their broomsticks.  I queried the price as the box had been opened and was shocked when I was told it was £45!! 

Instead of buying the Lego, I’m going to use the money to go on another day out and enjoy some quality time.  After the success of Saturday, I’ve set myself the goal of once a month, I will find time to have some 1:1 time with each of our children, as well as a day out all together.  It will need some careful planning to suit everyone’s needs, but seeing the pleasure on their faces like I did with my son on Saturday will make the effort more than worth it.  I want our children to have fond memories of spending quality time as a family, like I have of my childhood.  It doesn't have to cost a fortune either, what is more important is the time and attention you give your children.

Tuesday, 18 November 2014

Sharing our Experiences

The Early Years Support Team from our local area asked me a couple of months ago to do a talk to a group of newly diagnosed parents of children with ASD.  I attended a course like this 3 years ago and know how much I learnt from it, so was pleased to be able to have the chance to use our knowledge to help others. 

This morning I was apprehensive about doing my presentation but two hours later after giving my talk and being asked lots of questions, I came away beaming as felt I had given something back to a group of people who are just beginning their journey.

By no means do I have knowledge to be able to give the answers to all difficulties that families are facing, but I can share our experiences and point people in the right direction of where to seek further support. 

Most of the advice that we have been given of ideas of what may work for our Autistic children have come from other families who are in the same situation and we are still learning as a family.  As our children approach different milestones in their development, we come across new areas where we need support, so our journey with family life with ASD is a continual learning curve.  By sharing experiences we are helping others and in turn will learn new things from other families who are further ahead in their journey of living with ASD.

Sunday, 16 November 2014

Dressing up is not for everyone

Our local schools asked children to dress up as superheroes or people who are their heroes for the day to celebrate Children in Need.

Thursday evening our house was full of stress as our youngest son is not a fan of dressing up, however as he has a Superman onesie I thought he would be happy to wear that.  I was wrong and we went through a number of different outfits until he decided that he would wear a rugby top and tracksuit bottoms and go to school as his brother, who is his hero.  He went to bed in his clothes to make life easier in the morning and I thought everything was fine.

He woke up Friday morning struggling to breathe.  He has asthma and after giving him his inhaler I thought he would be ok.  Instead he kept saying that it hurt when he was breathing and he sounded very wheezy.  I took him to the doctors as a precaution as he has been on a nebuliser this year and had to have strong medicine to help with flare ups of his asthma.  

His chest sounded clear at the doctors, but as soon as school was mentioned and dressing up, it was clear to see the anxiety levels rising inside him, which were affecting his breathing pattern.  

Dressing up is a treat for some children and they enjoy the experience, others like our son are not comfortable with the whole situation.  Although we had told him he could wear his school clothes or anything else he wanted to, he kept focussing on the main point he had heard at school about being a superhero for the day.  ASD children tend to focus on one thing, rather than looking at the whole picture. Therefore, in his eyes if he wasn't a superhero, he would be in trouble when he got to school.  He is very literal in his interpretation and sees life in black and white. He didn't feel comfortable going to school as a superhero as that isn't what he would normally wear to school.  As he gets older, he will hopefully find days like this easier to manage.  

Our daughter who also has ASD was happy to go to school as Wonder Woman. However, this is probably the first year and she is now Y7, where it has not taken her hours to decide what costume to wear and for her to not be worried about what she is wearing.

Please have some understanding for children who find days that are different from the normal school routine hard to deal with.  What may seem as fun for some children, can be the end of the world for others who live by structure and routine and find change hard to embrace.

Power of Flippers

During the sensory processing course I attended this week, someone suggested our youngest son would benefit from wearing flippers when he is swimming.  He has a tendency to let his legs slump in the pool, so that he is at a 90 degree angle and although he tries hard to get his legs pumping hard and does get across the pool, he uses up a lot of strength to swim that way.  He has an underactive proprioceptive system, which means he struggles to know the position of his body, therefore when he is in a mass of water like a swimming pool, he cannot feel his legs.  By wearing flippers, he would regain some awareness in his feet. 

At his lesson on Friday, he wore flippers for the first time and his instructor was stunned by the transformation as he powered across the pool throughout the whole lesson.  The more he practises like this, the sensations will filter into his proprioceptive system and in time he will be able to use his legs on their own to swim as he will know what it is meant to feel like.

Sunday, 9 November 2014


I have loved fireworks since childhood and always went to the annual display at our local park. I have never been able to share this experience with our kids as they aren't keen on the noise or volume of people in the crowd. 

Last night our daughter asked to go to see fireworks. We took a friend from school with us, which was fine as we had planned this.  When she saw someone else from her class at the display, this completely threw her, as she hadn't been prepared for this to happen.  It stopped her going over to a stall to buy candy floss as they were standing close by and she didn't want to make eye contact with them or speak to them.  

Our daughter found the waiting around for the fireworks to start, difficult to do and she wasn't keen on how close people stand to get a good view. To overcome this she spent the whole time talking loudly during the display.  The noise of the fireworks didn't bother her and she wants to go back next year, as she enjoyed the visual attraction of the fireworks.  Maybe next year I'll be able to encourage one of our sons to go as well.

No TV Allowed

The kids were not happy with this decision but due to bad behaviour the day before, TV was not allowed on after school on Friday. This, initially, was met with a lot of protests but when the kids got home they did their homework straightaway then played a variety of board games. They devised an assault course in the living room and spent time chatting with one another, rather than arguing about what they wanted to watch on TV. You can guarantee that normally they want to watch 3 different programmes which causes a dispute in itself.

Instead calm reigned in our house and it was wonderful to see the 3 children working together as a team and finding something to do that they all enjoy and rediscovering toys they had forgotten about. 

I'm guilty of using the convenience of the TV or a DVD for the kids to watch so that I can get on with something else, but after our experience on Friday, I would be happy to go with a TV free zone after school every night.  I think this might be met with some resistance, however, I'm hoping that Friday has shown the kids that there is so much more to do with their time and they can have fun at the same time.