Summer, Autism and The Zone!

2 years ago I wrote about our summer and how having an autistic child effected us.  When I look back it was a very hard time for us.  What I wrote at that time, touched upon our lives to give a flavour but I held a lot back.  It was hard (emotionally and physically draining) - there is no other way to put it. This is because we were still new to autism, accepting the diagnosis and were unsupported.  Its not that our friends or family at that time didn't care, its just there was not a lot people could do to actually help.  I didn't know of any other parents that I could talk to about raising a child with autism.  Whilst some friends knew or met someone with autism, it is not the same as raising a child as each and every person with autism is very unique.  I was still getting over the stereo typical image of autism myself and understanding what the diagnosis meant for us.  There were not any support groups or activities, we were left to get on with it. The one disability play scheme in our old area, expelled us. There was a support group for families with disabled children but it was catered for children with more obvious disabilities and it was hard to fit in when your child's disability is hidden, meaning he looks like a typical child.  All in all, it was very isolating. I didn't declare all the things we went through in our day to day but if people asked I would tell them.  I guess at the time I was fearful at what our future held and that it would put others off from us, therefore isolating us further. A lot of time and energy went into appearing 'normal'.

 

Whilst Farnborough may not appear to offer anything compared to Poole and Bournemouth, there is actually a lot here to do for us as a family.  Farnborough may not have the beach or the shops or the nightlife but what they do offer is accessibility.  When we first moved we attended the National Autistic Society (NAS) Farnborough Branch, it is now a charity in its own right called 'The Zone' This has been a haven for us.  There are weekly afterschool clubs and a club that runs every other Saturday.  At these clubs there is the chance to socialise (as much as ASD children do) with lots of laptops (minecraft), latest consoles, handheld gaming, crafts and toys.  In the summer sessions, they also have bouncy castle, outdoor toys and go carts.  Oh and I mustn't forget the biscuits, as my kids love them.  It is also a chance to talk to other parents who are experiencing the same things as you and makes you realise how 'un-alone' we are.  Its a place to feel 'normal' when family life seems very un-normal compared to everyone else or how we expected it to be.  There is no judgement when meltdowns and wobbles occur, special interests are welcomed too. 

 

During the holidays there are activities scheduled both 'in' and 'out' of The Zone.  My sons really look forward to this and it is for the whole family to access.  When we were going through the diagnosis I would have loved to attended a group like this, it would have helped us so much.  As my son didn't fit my perceived image of autism it led to lots of confusion.  The day out trips are lots of fun.  My children loved the London Zoo day out, Thames Valley Playground, bowling, donutting, laser quest - lots of things I wouldn't even of been able to dream about doing without lots of support or personally hiring out the venue exclusively.  There is a fortnightly coffee morning to help with the mountain of paperwork, a sensory and book library.  It is a great support and as the children get older there is the Teen Zone.  I am also thankful for their Facebook page, a chance to talk and air grievances in a closed setting. Its also a great chance to find out about different things going on in the area and where to go to get support on different issues.

 

Hampshire also offers Shorbreaks, Gateway card which funds 1 to 1 support in mainstream activities, which we have also used.  This has had mixed results.  They also give funding to groups like The Zone.  This is why I shared the petition to stop the cuts to Shortbreaks funding as it helps us as a family do things that other families would take for granted. 

There are specific disability play scheme offers too.  My son is currently using Rushmoor and East Hants Kids scheme, for ages 8+ and has really enjoyed the days out (once we finally manage to get him on the bus).  We also go to the monthly swimming fun sessions with Disability Challengers.  Our children really enjoy this and its a great chance to just have fun together as a family. 

We have also been to the Lions fun-fest fun day which is for families with disabled children.  This is held yearly but my children have loved all the fun games and rides.  We have also done craft activities for families with disabled children organised by PAGS.

So whilst I do miss the beautiful beaches and our lovely friends from Bournemouth and Poole, there is plenty to keep us busy here!

 

3 weeks done!

So far the summer holidays have been flying by! We are over the half way mark. Some days have gone to plan others not so... lots of fun and memories made.

Here are a few photo's of what we have been up to...

Summer, Autism and Schedules!

Well the summer holidays have truly begun.  Whilst many parents are looking forward to unwinding, having later starts, no more pack lunches or homework worries, looking forward to going out and doing activities with their children, our life may look a little different...

 

B has completed his first year at Thames Valley School.  He has really enjoyed it, him attending this school has made a massive improvement on his behaviour and positively impacted the rest of the family's wellbeing, plus he has made a good friend.  I am so thankful for this! The downside to this is that he was NOT happy about school finishing for the holidays. B needs routine and structure. He needs to know what to expect and when to expect it each day.  I know lots of parents may say well every child needs this and to a certain degree, yes they do. It is different for B.  His ASD means he does not have the social imagination to be able to put together how his day will be, what is going to happen and what he needs to do and this makes him very anxious.  He has social communication difficulties which means he cannot (at this point) put any of his anxious feelings into words.  When highly stressed and anxious, he shuts down his communication and this includes him listening to reasoning or consequences. This anxiety and inability to understand this communication can lead to him lashing out/meltdown.

 

There is no cure or medication which will make it all better.  That does not mean we or B are 'doomed' it means we have to teach him in a different way and it is NOT a quick lesson or a simple explanation that fixes it.  After attending an 'Earlybird plus' course, we learnt a lot about autism including how to empathise and see things from a different perspective, visuals - they were really big on this!, communications and different strategies. As B was diagnosed later at 7 years old, I knew lots of the common parenting strategies did not work for him, infact we tried so many, read so many books and we sometimes ended up further behind then in front! I knew we needed to try something different so we went for it. 

 

At first he hated the visuals, and I mean hate, however we remained consistent and he accepted them.  We learnt through trial and error what was and wasn't acceptable to him.  He does not like to stand out as being different so his visuals need to blend in and be appropriate to his intelligence level which is high. Children with ASD are visual learners so a visual sequence of what is happening or expected, is what I mean by visuals.  Our early ones look quite professional, all Velcro and laminated (this is so when he throws them as he didn't like what he had to do, we can easily rescue it) now they are hand written and colour coded, as he can read and interpret written information easily.  When we first started they caused lots of meltdowns and I wondered if it was worth all the effort but now he reads them through and accepts them! (waiver: most of the time) A massive step forward and it proved to us, that they do work but it takes time and consistency. He doesn't refer to them often as he has quite a photographic memory and he probably still hates them deep down but has come to acceptance.

 

Anyway, so before summer fun can begin B needs to know what to expect and when to expect it to keep his anxieties at bay.  Our morning and bedtime routine visuals do not change, we keep this at a constant always.  We then have a daily chart of all the things that will 'definitely' happen each day and those in a different colour happens 'most days' but not all, for example if we are out on a day trip - he will get lunch (a definite) but he may not have computer time (most days).  He does accept this as he has had advanced warning to process and accept the change, we can't just spring changes on him and expect him to accept it.  We then put up a weekly schedule, so he knows what the planned activities are for the week - this is kept simple and one week at a time.  As a family, we use reward charts to train our children and this chart is up so he knows what is expected of him and finally we have set personal challenges for our children to aim for during the holidays.  They like a goal to work towards and find it fun to have a challenge.  This does not mean we will have a meltdown free summer but it will certainly help. 

 

On top of this, B also has a sensory diet to follow which is an activity every 2 hours, to help him so he does not sensory overload which also causes meltdowns... B also doesn't understand 'relax, just go play' He doesn't do play, he ends up fighting with his brothers or mucking up their games as his social imagination is not there.  It has improved but his social interaction skills, especially in play, are not.  Unless he is watching TV or on the computer, he really doesn't know what to do with himself and this is stressful for him. If I tell him 'go make a junk model' He will need me to sit with him whilst he does it.  If I want him to do something other than the TV or computer I need to help him do this.  If I am lucky, he gets into it and I can sneak away.  In our house we have a 30minute computer time rule - each child has 30minutes play only.  With that in mind I also have a list of projects based on B's interests to keep him occupied during the at home days or downtimes after an activity.

 

Whilst I do really enjoy organising things I personally hate having every part of my life planned out.  I prefer to be spontaneous, to wake up and go with how I feel but B is the complete opposite and I have had to accept that this is what he NEEDS to cope with the day and ultimately I want the best for him - not just meet his basic needs.  It is hard and it is exhausting. I have booked him onto a couple of play scheme days to have a break (although that comes with another set of issues which I will explain another time) and he needs time to adjust to 'new' people so meeting up with others can be tricky too. As I said before, all of this doesn't guarantee a meltdown free summer but does help us as parents feel more in control.  Thankfully my gorgeous husband is off for 3 of the 6 weeks to keep me sane.  So to us the holidays are not really about unwinding lazy carefree days (as much as I wish it were) but structure and scheduling! We will have fun in our way, we will create happy or at times just 'create memories' for our family.  Whilst my son may seem high functioning and even normal to the passer by or acquaintance, a lot of preparation and hard work goes into this behind the scenes. 

 

I will try and post some more during the holidays of what we get up to!

 

Happy holidays!!!