Summer, Autism and Westpoint!

I am so thankful to have had my husband off for 3 weeks of the summer holidays.  We have spent 2 of our weeks off, going on lots of day trips and making memories as a family together. It has flown by and its been so nice re-connecting together. 

 

Our last week together, we went to Westpoint, camping with our church family, as our holiday.    To someone who is not used to this, I would describe it like a festival, just under 4000 people gathering but with Jesus at the centre! There is lots going on to cater for a wide range of people and interests.  Morning and evening meetings with great teaching (you can select what you are interested in through the seminars) and worship times (big bands performing rock Christian songs).  The children are well catered for in their groups which are separated into age ranges, including a youth program as well as a special needs group (the ark).  The afternoons were filled with even more activities ie nature walks, street dancing, cooking etc or sports events or you could peruse the many stalls, inflatable parks or just chill out with friends. Our church catered for us, so we all ate together and for me it was a really nice break from cooking.  My husband has many talents but cooking is not one them. I have come back feeling really refreshed and ready to embrace the start of the next season. I can't believe I feel this way after being camping! I would say this is all down to God answering our prayers that Westpoint would be successful for us.

 

The last time we went to Westpoint was 2012 and it was a negative experience for us, so I was really nervous going back again. In fact just going on holiday for us is really hard.  My son really does not like the change in routines, so our last family holiday (also in 2012) was really negative and we haven't been away (just us) since. Last year, we went away for a couple of days at a theme park with my parents and my sister and her family and we enjoyed that so we are slowly healing from the 2012 experience and decided we would try Westpoint again.  I am also the type of character that doesn't like to be defeated so I wanted to go back and face it. Lots of prayers prayed :)

 

How we did each day - We didn't sign up to every organised event or try to attend every meeting.  If we had approached it this way I think we would have been frustrated with one another and perhaps been overwhelmed by it all.  We took a flexible approach to each day and it worked well for us.  I had 2 children attend the ark and they both loved it. Admittedly, one of them bolted over the fence as soon as I left the tent but the staff worked with him, there was no big panic (not on the outside of their faces) and all was well.  That was the first and last time he did that, as he enjoyed it so much.  That in itself, is quite an achievement for him.  My other child didn't want to leave all the sensory equipment and really enjoyed hanging off the big bouncy equipment.

 

The afternoons we kept flexible too.  My boys really enjoyed playing nerf gun wars or football with the other boys from our church. We did some scheduled activities but they also really liked meeting up with their old friends from our previous church. 

 

The evenings, we attended the worship together then would get the younger boys to bed.  The older boys could stay up a bit later and enjoyed playing uno/card games with their friends.  There was evening groups for the older children but by that point in the day my older ones were not up for that.  Once they were in bed, we chatted with friends.  The meetings I went too, I really appreciated.  The teaching was really good and inspiring. I found the evening meetings didn't work too well for me as I was too tired to concentrate but I really enjoyed the morning bible sessions and a choice of seminar or extra worship. I was really blessed by this. Doing less meetings helped me to focus on the messages I did hear.

 

I loved seeing the boys make their own entertainment and no minecraft/electronic games were played! I loved listening to my little boys in their sleeping pod discussing their day and what they had enjoyed, snuggling up to one another.  It wasn't all perfect happy families, but we expected that and would have either quiet time in our tent or take a child off for some space.  At the end of Westpoint the kids (and us) are really looking forward to going again next year!

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!!! 

Birthday Time Again

A few weeks have passed since our youngest child's (L) birthday and he is still talking about his special day with a big smile on his face and is full of anticipation for his next birthday.  I love purposefully planting happy memories and love that he was so taken by his day. I enjoy planning my children's birthdays and taking time out to really think about my child, what they would like and how I can make them feel special.  L joining our family was a very special time for us and definitely worthy of a celebration - we are so thankful for him!

 

Typically, we will ask the child what they would like for their birthday - present wise and how they would like to celebrate.  Sometimes they would like a party, other times they want an experience or a meal out.  The birthday child chooses the meals for the day, tells me the cake he'd like and has unlimited computer time (that's the only time, so is very special to them). They are normally busy enjoying other things to be clued to the screen all day anyway.

 

 

 

L chose coco pops for breakfast and party food.  He loves Ben 10, so wanted a Ben 10 cake and party theme.  (He also loves skylanders swapforce).  Personally, I would rather a pirate theme or a younger character but its his day so he gets to chose and I have to accept he's growing up - even though he is just 4.  He really wanted to have a party this year with his friends. This year he has been invited to quite a few friends from preschool parties and has been patiently waiting for his turn.  He didn't have any grand ideas for a party, just that he wanted one.  He doesn't have a massive group of friends so a soft play type of party we ruled out due to numbers and decided to do a party in the garden with a few of his friends and our family.

 

 

 

As I said before, Ben 10 not my favourite but it is L's, parties are a  great time to get really creative.  Pinterest can give you lots of ideas on little touches on the theme to make it stand out.  If you can't make their brilliant ideas or have the time, someone is normally selling the product on Ebay.  I managed to get a great deal on Ben 10 tableware at party pieces so I decided to do that.  I also read Annabell Karmels party planner book and took to making the food as creative as possible (for me).  Sandwiches I made in advance and froze, cupcakes I bought value and then decorated with L, sausages bought precooked but presented in a fun way.  This way I didn't spend ages prepping food.  I made his cake from scratch but bought a paper cake topper of Ben 10 from Ebay.  The running order of the party went:

 

Hello and welcome

Decorating biscuits

Free play - I had football goals and water play table set up in the garden along with balloons and we have a trampoline

Party games - musical chairs (that did not go well - not quite old enough), pin the tail, traffic lights, musical statues and pass the parcel

Food and Cake

After the food, L and his friends played with his toys inside as it was getting too hot outside.

 

 

 

Party bags were simple, cake, balloon, sweets, sticker and a small gift. Party prizes were a sweet from the tin.  It was easy to clear up as they spent most of their time in the garden.  We did the party in the morning and the afternoon, more family came to visit and he opened presents through the day. 

 

Looking forward to the next one!

 

Below is L eating a white chocolate covered marshmallow dipped in sprinkles.

 

I'm Back!

Well its been over a year since I last blogged, not an intentional decision but life just moved at a pace which meant for that season, I needed to concentrate all my efforts at home. I was hoping to keep blogging so that our long distance friends could see what we've been up to since re-locating.  However, we are now in this place so thought I'd give you an update and will unpack more in later posts. 

 

It has been a really busy season for us.  Upon moving here, we struggled to find a suitable school for our eldest son.  This meant we started a new chapter of home schooling and fighting the system in order to get him in the right setting.  This was a hard fight but we won! He is now at an excellent school -Thames Valley School.  It is a free ASD school sponsored by the NAS.  The week B started school, we then got told the landlord wanted his property back.  We looked into buying but there was not enough time to complete so we quickly found a rental house that we thought would do us for the next 6 months, whilst we looked to buy.  However there was lots of stress with contracts and things going wrong.  We did move in, a month before Christmas.  Christmas felt a little bare as when we packed, we put a lot of our things into storage and just got out what we would need for the next 6 months.

 

During this time our 2nd eldest N, had started the process of diagnosis which we are still going through.  We had to change his diet to low salicylate which meant quite a rethink as he could no longer eat a lot of vegetables and fruit. He is now back to eating normally - Thank you Lord! Its a completely different system to Poole and we are slowly working our way through it. Obviously moving here we had new doctors for B, (although not CAMHS, even though we saw them weekly previously). The NHS service is just different here.  This has led to some more diagnosis' for B, which helps us to understand him more. Our youngest L, has speech delay and has been assessed and is now on the long waiting list...  Thankfully he will be starting a school which has a resourced provision for speech and was told by one his therapists that it was the best school in the area for speech.

 

After Christmas, we started searching to buy a house and this is when the market turned.  It was hard finding and viewing a property before it got snapped up.  This led to so many disappointments as well as being outbid, offers accepted only to then be gazumped - a big rollercoaster.  We eventually found a property but then there was a problem with the mortgage and it was really heart breaking when it all fell through.  I felt like the whole thing had been such a big waste of time and was so disappointed. House prices had escalated to the point where we could no longer reach so it was time to accept this was not the plan for us.  We started to unpack and clear out, making this place our new home.

 

Along with all of this, from moving down here Jon and I between us have lost 5 people.  The first being Ally Mullany.  She was the head teacher of the boys school down in Poole.  Not every parent has a lot to do with their children's head teacher but we did.  She was vibrant, petite lady with bright red hair.  She was very caring and did whatever she could to support us.  We went through some really hard times whilst my children schooled there.  She had been to our home and my children had travelled in her car.  It was unexpected and a shock when she died, being so far away, grieving felt odd as technically we did say our goodbyes and she gave us a present.  About 2 months later my aunt was diagnosed with lung cancer and it was terminal, a few more months my uncle died of emphysema.  My aunt, from diagnosis only lived a couple of weeks.  I remember back to my childhood and how she faithfully sent birthday cards.  Even though she wasn't a part of the everyday, she thought of us and was part of our story. I remember how funny my uncle was, he had a great sense of humour and made me laugh.  I remembered back to the parties that my parents used to throw and seeing him dressed up.  It is sad to loose family and to see the pain that's left behind.  It is a good reminder on how short this life is, and how family comes together during these times, to love, support and remember.  This year, Jon lost his aunt and his brother in laws, father.  Whilst I don't remember his aunt I did know his brother in laws, father.  Its quite scary when relatives near/close to your parents age start to die.  Whilst I feel we have had a lot of deaths recently, it doesn't make it easier.  I know more about funerals than I care too.

 

Its been an eventful year with more than that to add but they're not my stories to share.  It has been challenging at times but we have also experienced many blessings.  Life has not worked out quite as we had thought but we have peace in God and will trust in His plan for us.  Yes, I am still glad we chose to relocate! 

Now that I have got my excuses for not blogging out of the way I hope to be back soon :)

 

If you are new to reading my blog, or want to find out more about me then please read my testimony May 2011 posts and for our autism story look at posts starting from 30/4/2012 Thanks.