The Easter Break

I hope you all had a fantastic Easter Break! I thought I would blog today about how our Easter break was spent.  I have recently been completely wiped out (virus) so was looking forward to a break from the norm.

Good Friday - We did our readings from the resurrection eggs, we had hot cross buns for lunch and we prayed and reflected on the cross, what it means to us.  We talked about sin, what it means, where it comes from.  Today we were staining the wood for our kids new bed and we went out to eat for dinner as a family.

Saturday - We opened the empty egg and talked about how Jesus followers must have felt.  We were still in reflection mode but we know that Sunday is coming.  We did Easter themed crafts to decorate the house ready for tomorrow. Today Jon and my dad made the boys bed.

Easter Sunday - Celebration day!  Today I was serving in worship so it meant how we normally do Easter Sunday had to change.  The children were still really excited but I had to be at church for 8am so there was no time to prepare beforehand.  Whilst I was helping Jon prepped a sweet dough in the bread maker. We all had a great time at church together.  The children had lots of fun doing various activities and crafts and we had a great time worshipping and hearing from God.  When we got back home, we had a light lunch and made resurrection rolls (we normally have these for breakfast at Easter).  The kids enjoy making the bread and taking their Jesus (marshmallow) dipping him in herbs and oil (melted butter then into the cinnamon and sugar mix) they then wrap him in the dough (the robes) and place in the oven (tomb) for 15mins and then once they have cooled slightly they open them up and see Jesus has risen (marshmallow has melted). I then prepped the lamb dinner and we had an Easter egg hunt.  The boys get Easter eggs from us and the family.  We take it in turns to hide each others eggs, so everyone gets a turn in finding their eggs.  We couldn't do a free for all hunt as the ASD child wouldn't be able to cope.  It all has to be planned and he needs to know what he is getting in advance as he does not like surprises.  This is our normal.  Once dinner has been eaten, they are allowed to choose an egg and eat it all if they wish.  The rest get saved into their sweetie bags (yes they still have sweets and chocs left over from Christmas).  We all sat down and watched a film together.

 

First week of the hols:

L has graduated from a toddler bed and now he shares a triple bunk with his other 2 brothers. Monday we spent finishing off their room and chilling out (we were all quite tired from the day before).

 

Tuesday - Jon was back to work and we did the housework together.  I think its good to teach the boys how to do jobs (yes it would be quicker to do it myself) but they do earn extra computer time if they do it properly and with a good attitude - which they did.  However, come the afternoon I felt like a peacekeeper as fights seemed to break out all the time!

 

Wednesday - Today we celebrated The Zones 1st birthday.  We had a great time at the party with other autistic families.  I feel confident to take the boys here by myself and most of the time its successful... when its not, we are not judged but help is offered.

 

Thursday - My lovely friend helped me take the boys to their dentist apt (it was a rough pre morning) but the visit went well and we went to the park afterwards.

 

Friday - Jon works from home.  Its great to have an extra pair of eyes and hands around.  We decided to have a family BBQ in the afternoon, enjoying the lovely sunshine.

 

The weekend:- I help run The Zone Saturday session and on Sunday Jon served on the PA team at church.  In between this we rested.

 

Week 2:

Monday - Chill out day! Today we did nothing and it was great.  The boys seemed to get on well and spent the day on the trampoline, playing football, colouring in plants v zombie pictures (thanks to free colouring pages from the internet) watching TV, reading and of course their computer time.

 

Tuesday - Housework challenge.  The boys did really well and earned their extra time - only problem was the server went down... luckily they accepted being able to eat from their sweetie bags instead.  I was feeling brave in the afternoon and took them to the park (near our home) by myself - we survived! Might seem odd to some but sometimes these little trips out can end really badly for us.

 

Wednesday - Zone Day.  The boys really enjoy playing games, the go-carts and the bouncy castle. Child number 2 had a moment towards the end but we did get home and had some quiet time to calm down. This is normally the TV.

 

Thursday - We went to Frensham great pond with my lovely friend and helper.  The boys loved playing at the beach and dipping in the water.  They also enjoyed yummy ice-creams, aka bribery to get them to come home.  We also found out J will be going to the same junior school as N is September :)

 

Friday - I took the 3 older boys donutting with The Zone.  We go with The Zone as they hire the whole slope out and I know I will be with others who have similar children.  They normally really enjoy these sessions but child number 2 kicked off before we got going (helmet worries) and child number 1 kicked off during the event, so we had to call it a day. Thankfully Jon works from home on Fridays so it was easier to separate the children and as child 3 (got the brunt of child 1) we made chocolate brownies together, which he loves - well any food, he loves :)

 

So that has been our Easter holidays - I have really enjoyed not getting up early, not remembering who needs what kit on what day for whichever club they are doing, no school pick up juggling acts, no homework battles, fun activities, spending time with my boys, celebrating Easter and the beautiful weather!

 

 

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!!! 

Week 7 and we're done

Well i suppose its really week 6 and a half of the summer holidays....

 

I had a great weekend at my mums, it was great doing nothing and relaxing - I so needed just to be still and so needed, not to be needed.  It was also amazing not having to think about dinner/lunches etc and then clearing up from meals etc.  It was bliss to just have an afternoon nap...

 

Back to reality then...

 

Monday - Housework (well attempted) and Bourne Valley walk

Tuesday - last day of the hols, i let the kids choose what they wanted so after they all had computer and DS time, we made rocky road, scootering, finished off some homework, read stories, a sticker book, played toys and made a den in the living room.

 

I am feeling better about the school run - all school stuff ready to go - I love how white, new shirts look and i must remember to make an 'in head' photo of how nice they'll look on their first day back - as come hometime, their new shoes will be scuffed and somehow they drew on the arm of thier short sleeve shirt, the frube will have exploded down the front and even though i oxy white hot wash them, it just won't be the same next time its on.

 

I think N is feeling gutted he has to go back to school, he'd rather the hols would go on for longer.  B is not really commenting on how he feels but judging by todays events... I'd say he's feeling anxious. I'm hoping the lure of seeing his friends will make it ok in the morning.  Also i'm thankful I have some help in the morning too, with my younger children (just in case).  Its hard not to feel anxious but they pick up on your mood so i'm just gonna have to put on my happy no nonsense face and get on with it.  I can't quite believe the summers over and that the autumn term has begun. I will miss the leisurely starts, not having the stress of being at places at certain times and i'll miss having the children around.

 

However, what I do like about this time of year, is it feels like new beginnings (even though its 3/4s of the year through) and its the run up to Christmas!!!!!  Also there are lots of birthdays for us, so lots of reasons to celebrate and have fun.

 

 

Week 6

Well our camping weekend didn't go quite as expected, so we have been quite exhausted and just been recovering.  This week has mainly been a catch up on jobs week.  We also had to take B to Drs for assessment for his statement - thankfully it timed well with Jon being at home.  They have also referred us to CAMHs team for additional support, inbetween our consultant appointments.

 

Wednesday - housework and dog agility trail

Thursday - games (my oldest has discovered Cluedo) and play-do session

Friday - barbers for the older ones, hairdressers for the younger 2

 

I can't believe this is week 6 of the hols! I have been busy labelling and getting all the uniform bits together for school next week, as well as catching up on the mountain of ironing from being away.  My children seem to have just got used to the lazy starts this week and L has even laid in bed till 7.30! It could be of course due to the fact its getting darker in the mornings....

 

Jaden's birthday is next week so have been prepping everything this week as i know next week is going to be busy.  He also seems to have had a mini growth spurt so I've been sorting out the next size clothes for him to wear.  I'm in 2 minds whether to put the summer clothes away, its been an appalling summer - weather wise - will it get better and will we get that Indian summer? The last few days have been really cold I've been wearing my boots and a big thick cardigan, even thought about putting the heating on.....

 

Mentally i don't quite feel ready for the school life to resume, for packed lunches, school runs and pick ups, homework, different practises, child starting in reception - the thought of starting it all over again makes me want to hide under the duvet....  So this weekend I'm planning on having a restful weekend at my mums (by myself) and hoping this gives me the break i needed to keep on going and embrace all that September brings.

Week 5 and camping....

Well week 5 has been a mini week for us, this is because daddy is off from Wednesday and we're going camping with our family of churches!

Monday - we met with a friend and went to boscombe gardens, which is great for young families

Tuesday - packing for camping and making cakes, kids watched a lot of TV - i know not very good for them but they were safely entertained.

Wednesday - Family day and my sister and her family are coming down. They are having a mini break at our house, living by the coast, as well as dog, cat and hamster sitting.

So packing for camping was not easy - especially with a broken finger....  Also we have a zafira but as a family of 6 we fit in it and camping stuff as well - not so much.  We are quite thankful our church is taking a van and our neighbours (who are also going) had some room in their car to take extra. 

We are taking some food but are planning for me to go to Tesco and do food shopping with the little boys when we get there and daddy will put up tent with the older 2.  Might not be best plan, but as I've hurt my left hand and i still don't have feeling back properly in the right one from the food processor accident (and hubby gets a bit moody when putting up tent if i don't do it just as he wants) we figured this would be the better way.

I have checked the forecast and we're due some rain and dry days.  Unfortunately this just means lots of clothes.  I always get cold so have brought thermals, fleece PJ's 2 sleeping bags and have no doubt I'll probably still be cold.

This is our dinner menu:-

Thursday - spag bol (i'm making spag bol at home before we leave)

Friday - Sausage casserole (this has been made previously and frozen, so should be defrosted by dinner time)

Saturday - Tinned chicken tikka masala from tesco (actually quite a nice curry) I'll serve with rice and poppadoms

Sunday - Church BBQ but i also have a meal of tinned chicken sweet and sour (prev tried and is ok) which i'll serve with noodles and prawn crackers) I'm taking this meal as a back up incase kids won't eat bbq etc

Monday - we come home!

I have planned our meals so its just a case of heating up or boiling a pan of water.  I add the crackers/pops just to make it feel more yummy.  During the day I'll bring cereals for breakfast and as my asd child likes to have the same type of lunch everyday, it'll be sandwich, cheese and yogurt.  I'm planning on keeping food cool in the cooler.  I'll also bring some snacks and treats.  The cakes will go to our main church so we as a church will have cake and tea to share.  We have had to do some prep with our asd son for our trip and we have signed him to the Ark, which is an area for children with SEN and disabilities.  He has a specialist camhs nurse as his buddy so i am hoping he will settle into his kids work and allow us to attend the meetings.

I'm looking forward to spending time with God, getting great teaching, having fun with our church family together - perhaps not so keen on the camping part... However the boys are very excited to be camping....

Week 4 of the hols

Well as you have read from previous post, we've decided to stay in during the week unless we have help.  This week our friends were on holiday so its an indoor week.  This is what we've been upto....

Monday - Play (housework) and archery activity

Tuesday - remote control car outside in muga (multi use games area just opposite our house) and crafts

Wednesday - painting and stamping (when dry) playing in the garden

Thursday - remote control car in muga, homework, and games ie magnetic pictures and battleships

Friday - Out in the garden and building a den, playing games ie build a beetle

Tuesday I felt emotionally quite drained after Mondays events but I tried hard to be positive.  Then I had the inevitable phone call from the short breaks company.  From this conversation they had decided to pull Brandon from his future activities because they feel they can't meet his needs (even though they are for disabled children) they didn't state whether they would refund me but i'm too weak to ask.  They deal with a wide range of disabilities but they are not trained in the area where B needs support.  They did try and be positive and would like to meet with him and find a suitable activity for him for October half term.  I held it together quite well during the conversation.  Afterwards it just felt so sad, another opportunity for him to socialise was gone and rest bite for the rest of the family was now finished.  It just felt that our world of what we could do is getting even smaller.  I did pick up towards the end of the day because there is nothing that can be changed so I just have to adjust - there is no give up or can't cope option.  I sat and wrote a list of planned indoor activities and thought about scheduling our day so it is filled with worthwhile pursuits.  I also started to think about the best way to teach him how to deal with conflicts etc and started to devise a plan - Its not easy, I'm not a teacher have no prior knowledge or experience with autism but I know some basics from the early bird course, so I use this as my foundation. 

If you're wondering where my strength comes from to carry on, its God:

Isaiah 40 'i will give power to the weak and strength to the weary'

When I feel weak I remember this verse and put my faith in it, God will supply my needs - he gave me our children not to harm but for good - I will trust in Him, that his word is true and that this will happen.

The weekend was filled out and about doing different activities.  It was great to have Jon around.   We're off camping next week away with our church for the annual church network gathering - known as Together at Westpoint.  We're part of New Frontiers churches. Looking forward to having this time together but lots of planning to happen first....

Our Day

I thought I would post an itinerary of our day, however good, bad or boring....   I had planned the day in my head and thought it'll probably be quite uneventful as I really needed to do the housework and hadn't really planned anything but that, as B was out to an activity in the evening.  However as you read on, things don't always go to plan... I was in two minds whether to post 'our day' but it does show the reality of our lives with a child on the spectrum.

Just thought I'd point out I do try and go to the gym in the morning a couple of times a week before Jon leaves to work - if he's not working away, so that wasn't an added 'look how good i am moment' - I need to exercise in order to keep my stress levels down and hoping it will give me increased energy levels in the long run.

This is an account of our Monday.

6am wake up

6.30am at the gym - 20 Min's cardio, weight training, shower and get ready

7.40am back home - empty dishwasher, make Jon tea, help get boys ready, put last nights ironing away

8am Jon leaves for work

8.30am breakfast for us, bible time with kids and feed the dog

9.15am sort out boys activities, begin housework

10am prepare snack for boys, sort out games continue on with housework.

By housework I mean, washing/drying, tidying up from weekend, polishing, ds toilet room, kitchen and hoover.  It is a light house clean up as in between this I'm sorting out conflicts and timing out computer allowance.  They are playing together but its very loud so am now nestled in the conservatory sorting and cleaning the toys and books to keep a better eye on things.

11.20 play has become too boisterous so TV break

12.00 lunchtime

12.30 Younger boys are playing and B has decided to make micro lite models.  I decided to hoover to finish off downstairs. L is crying and really upset and it doesn't take long to realise he touched one of B's models and B decided to punish him.  Comforted L, he was ok.  B did not understand why his actions were wrong at all, even though i kept my language very simple and that it is unacceptable to hurt others.  He becomes very cross with me and goes on a rampage.  Eventually goes out into the garden (yes it was raining) I put L to nap and i ask the others to tell me straight away if B leaves the garden.

1pm dealing with the episode.  As its pouring with rain I see if i can coax him back in by cleaning his hamster - as this is something he wanted to do - it did not work.  I decided to leave him and see if alone time will calm him down.  Although still keeping an eye on him as our back garden is not totally secure.  He comes into the house, not speaking or acknowledging anyone and takes several things back from the house to the play shed, including his yellow calm down bag.  We leave him be as can see he is calming down.  The other 2 are playing a nice game together so I distract myself by making a bread pudding.

2pm B calls to his younger brothers to come and see the den he has made.  He seems much calmer now and I'm quite pleased that he made his own little den in the garden.  It is still raining but the younger boys go out and play in the rain with their coats on.

2.15pm B comes in to say he wants to say sorry to L now.  Its also time to wake him from his nap.  I bring him down, B says sorry.

2.30pm All are now all inside and we have a snack (dried fruit) A new toy box comes down and the younger boys play.  I'm feeling a bit tired now so sit down and watch the last bit of 'escape to the country' with B who asks several questions through it, as he tried to understand what is happening and what the point is.

3pm kids TV goes on, I decided i'll get more of a sitdown in peace this way

3.30pm craft time.  We all sit round the table and do rub ons and stencils as well as magic painting.  When they are settled into activity I start making dinner.  The younger boys eventually trail off and play.

5pm dinner is served followed by pudding

5.30pm tidy up from dinner and the play room etc

5.50pm daddy comes home, early for a change

5.50pm onwards convincing B to get changed as he has a short break of archery and abseiling to go to - this is a short break of group activities for children with disabilities.  Archery is something he has always wanted to try.

6.20pm finally, he is dressed appropriately and we leave the house

6.35pm arrive at activity.  He is not keen to go, he hides and doesn't really talk to anyone.  He does not like meeting new people and new surroundings.  It takes a while to convince him but the group leader is prepared for him and i do leave (a rather anxious son) at the activity.

7pm come home and have a quick browse on the Internet - hubby is still making sure the younger boys are settling down to bed.

8.10pm leave to pick up B

8.25pm when i arrive, B is in high anxiety state and currently running around the site on shutdown communication mode.  I try and find out what is happening but its a difficult time as everyone has come to pick up their children.  I didn't get the full story until later on as I needed to deal with the current situation - find my son and calm him down.  This is what had happened, B settled and did really well at the archery.  He wasn't keen on abseiling but was encouraged to have a go.  As he went down he got more and more anxious as didn't like it and by the time he hit the floor was in meltdown mode.  The staff and i caught B and walked him back to my car but he was too agitated to get in, we had to restrain him so he didn't run off and for his own safety as it was getting dark.  Its not nice restraining an ASD child but in this instance we had too.  ASD children are very sensitive to touch so being held down is traumatic for them and they will use aggressive tactics to get away.  It does not aid calming down at all.  I had to call Jon to help me as there was no way i could get him home on my own and the site was going to close.  Jon had to find an emergency babysitter - thankfully he did - our neighbour.  When he arrived B broke free, the leaders had re-caught him.  Jon and I quickly made a plan of Jon restrain in back seat, I will drive.  We both grabbed him by the arms put him the car and away we went.  We're quite used to the kicking, head butting and screaming by now.  Just as we're to leave we discover they need to lock down facility and our other car is on site.  They kindly agree to keep it open for us and hope our kind sitter would not mind driving back with us and taking Jons car (we couldn't leave it as Jon was out early tomorrow for work, its a work car so she would be able to drive it insured). 

We leave site at 9.05pm and he is beginning to calm down restrained in back seat by dad

9.20 back in the car with our kind neighbour to collect the other car.  When I got there the leader was able to fill me in on what happened from his perspective and we drove home

9.35 B is calm, we send him to bed etc

9.45 We go through the events together, the lessons learnt and to try and calm ourselves down from it all.  When B is like that we have to be really strong, firm and our communication has to be basic, one voice in neutral tone.  This is to keep his processing time right down, as he is highly anxious all his senses are on high alert and we need to keep everything calm.  As you can imagine, this takes a lot out of you and when its over all your emotions just pop to the surface. 

11pm head up to bed, although its difficult to sleep and could be up in the night looking after the children.

Meltdowns are not just an odd occurrence, its a very real part of our day, some are worse than others.  We had prepared him for this evening events however on this occasion, it was too much.   It is sad as you see the other disabled children appear to cope quite well.  In someways this meltdown wasn't that bad, because I didn't have the younger children with me, it wasn't too public with lots of people watching us and I had help with people who understood. 

B is 8 years old, nearly 9.  He is quite strong for his age and his meltdowns are not like toddler tantrums they are really disturbing.  Its hard to describe but its not a spoilt child having a paddy when things aren't going his way.  After tonight's events and because of the other meltdowns/near misses we've had this summer, we decide its no longer safe for me to go out with just myself and the boys.  It is too risky for their safety and Jon is not always local to help out. We do not have a big support network around us to help us, this alone is very stressful. We also think that although the day has been fairly relaxed due to the upcoming evening activity, the mini meltdown he had earlier in the day affected him more than we realised. 

We are very thankful that we have lots of toys, a garden and that mummy has an interest in art (not quite sure that this is why i went to uni though??)  We can always go out at the weekend and perhaps next summer holidays we will look to hire a carer to help us go out.  It is a really hard balance as you want to expose your child to as many interesting and helpful activities as possible - i do not adopt the - 'i can't do it because I'm disabled' philosophy I'm much more 'we do it despite of my disabilities' - because of this, i guess we put our selves more at risk.  I know that staying in may not really fit in with our life philosophy but I do have be practical and part of being a parent is keeping your child/children safe.  I'm outnumbered, so we'll just have to do and plan things differently....

Week 3!

Well week 3 and things are begining to settle a little... This week has been quite a go slow week in terms of not being out and about.

Monday - playing at home with afternoon swimming lesson

Tuesday - not feeling too bright today so had a dvd and play at home day

Wednesday - Family fun at Poole town centre, they did craft, salt stone carving, circus skills with a picnic lunch in town.

Thursday - Lucas had temp and we had to wait in for virgin install.  We did a craft marathon and in the afternoon the boys were happy to play with the new TV package

Friday - Moors Valley and Library

It was quite nice to have a slower week especially as B is getting more into being at home now.  Although I still have to plan lots of activities, he wasn't as restless and the meltdowns are becoming less frequent.  I have also discovered he enjoys craft activities so we have been busy making lots of things, painting, sticking and paper aeroplane competitions.  One of my favourite things is getting a pile of books and reading them to the children.  N likes to read to his younger brothers too, so a trip to the library was needed to refresh our book collection.  These are some of our choices...

L = First 100 words by Richard Priddy, Dear Zoo, Usbourne Noisy Farm

J = Tabby Mctat, The cat in the Hat, Green eggs and ham

N = Robin Hood and he is about to try reading, Spy Pups series

B = Mr Gum books

Week 2 of the hols!

Week 2 and not done too well in taking photos this week - will try and remember for next time.  B (asd) is still transitioning into the summer break.  We've had some hard moments this week so am thankful to friends who have helped us out and gave me a break! (hubby has also been mad at work doing days, evenings and weekends so not been around to help)

Monday - Indoor play centre

Tuesday - Popps meeting for SEN statement, which meant I was very thankful for a kind babysitter for my 4 boys especially as the meeting went on for a lot longer than planned. Afternoon =  swimming lessons...

Wednesday = Met up at a friends house to play

Thursday - Met up with friends for an indoor picnic (not so great weather)

Friday - B was at disability break - sailing and kayaking for the day.  The younger children and i had a restful, chilled out day playing at the park and at home together.

 

So inbetween the activities, we do different things.  My younger children like playing with their toys - we have lots of different toy boxes so they often just choose a box.  N wants to be a spy so loves these imagination games along with action figures.  J just uses his imagination and plays his own games, Lego or joins in with what N or L is playing.  L loves balls and also the music box.  We do activities together like crafts, me reading stories or baking cakes.  All the children like outdoor play so we sometimes go on the scooters or grab bats and balls and play in the multi use games area outside our house.  We limit their time on the computer for 30mins and although I was going to set a limit for the TV too, i find i need them to watch TV to allow me to make the dinner etc or some quiet time whilst Lu is napping.  Thankfully they are not really into the TV so it is not on very often whereas they would spend all day, everyday on the PC, wii and ds consoles.

B is different as he doesn't just play, he doesn't know what to do, so at home I have to constantly feed him activities to do.  Which is exhausting and partly the reason why we go out and try to do something everyday.

Having B away for the day is a real rest bite for all of us. It was so nice for the other boys to play and interact together. B does try to join in with his younger siblings but his need for structure and routines means he normally bosses the younger ones around, enforces new rules to their game and they then give up playing as its no longer fun.  His rules are his way of understanding the game.  It was very hard getting B to go to his activity (even though he had chosen to do it) and very worrying for me to see him so distressed but he's with people who understand his condition and not shocked by his behaviours.  After lunch when i realised he would probably make it through the day I finally relaxed. It was nice to chill out.  It was good to spend time with N,J and L at the park and at home. It is a different atmosphere and a good break but that's not to say its awful when he's at home, its a change and it does us good.  When we picked up B he had, had a great time.  He was calm and relaxed and I felt he had really done well at overcoming his anxieties and actually having a successful day - he of course promptly reminded me of the treat i promised if 'he gave it a good try'  which of course he had done.

This week the boys have also been writing out their Christmas/birthday lists as that season will be upon us soon.  J's birthday is beginning of September so I normally plan and get things ready at the same time.  After him there is a flurry of birthdays and events taking us through to the new year and beyond.  I find time seems to speed up in the run to Christmas and being prepared early helps keeps my stress levels down and i can get better bargains.

So thats what we've been upto....

50 things to do... Summer challenge!

The National trust posted an article on 50 things to do by the time you are 11 and 3/4 for fun i thought i'd re-post and see how well or not well we are doing and it can also be our new family challenge for the summer!

1. Climb a tree
2. Roll down a really big hill
3. Camp out in the wild
4. Build a den
5. Skim a stone
6. Run around in the rain
7. Fly a kite
8. Catch a fish with a net
9. Eat an apple straight from a tree
10. Play conkers
11. Throw some snow
12. Hunt for treasure on the beach
13. Make a mud pie
14. Dam a stream
15. Go sledging
16. Bury someone in the sand
17. Set up a snail race
18. Balance on a fallen tree
19. Swing on a rope swing
20. Make a mud slide
21. Eat blackberries growing in the wild
22. Take a look inside a tree
23. Visit an island
24. Feel like you’re flying in the wind
25. Make a grass trumpet
26. Hunt for fossils and bones
27. Watch the sun wake up
28. Climb a huge hill
29. Get behind a waterfall
30. Feed a bird from your hand
31. Hunt for bugs
32. Find some frogspawn
33. Catch a butterfly in a net
34. Track wild animals
35. Discover what’s in a pond
36. Call an owl
37. Check out the crazy creatures in a rock pool
38. Bring up a butterfly
39. Catch a crab
40. Go on a nature walk at night
41. Plant it, grow it, eat it
42. Go wild swimming
43. Go rafting
44. Light a fire without matches
45. Find your way with a map and compass
46. Try bouldering (rock climbing outdoors but with safety mats and short drops)
47. Cook on a campfire
48. Try abseiling
49. Find a geocache (use GPS and other navigational aides to locate hidden containers.)
50. Canoe down a river

Well i'm hoping as we're staying in the UK that throwing snow, will just not be a possibility! also as mine are still quite young, some just aren't practical yet or seasonal but lets give it a try and see how we do!

Well, Week 1 of the summer hols is over! we've survived.  I thought I'd blog about what we've been upto and share some photos.  This week we've had amazing weather so....

Monday - Beach day with friends at Hamworthy Park

Tuesday - Walk and play at Bourne Valley, playing at home, making cakes and the paddling pool.

Wednesday -  Vets, boys cashed in on their pennies and was allowed to spend their money. N bought a big Chelsea bun and B a crab fishing net. Then met with friends at Sandbanks Beach

Thursday - Crab Fishing then home to paddling pool

Friday - Walk and play at Bourne Vally, meeting with friends at the pirate themed park (Canford Cliffs)

I guess we've been out lots but after what feels like months and months of rain and grey, enjoying the sunshine and the heat was an opportunity not to be missed.

Its been quite a hard week for B as he finds it very difficult to adjust from school life to home life and being on summer holidays, due to his ASD.  We have used sequence cards before we have left home to explain what we are doing and when we'll be coming home.  This helps him close the loop on his communication.  I have found it stressful as he expects me to structure every minute of the day (similar to school) and when i can't or am attending to another child's needs, inevitably the meltdowns start.  There are issues everyday, normally I'll plan the big things but forget the little things and that's when problems arise. He is adjusting to life at home but its hard work so we've been using the timeout spot and reward charts for our 3 older children.  I prefer the use of positive rewards to encourage good behaviour.  Also it is a good parenting aid, making sure I'm being mindful to catch them doing good and to praise them for it...

Toffee taking N for a walk

Building with marshmellows and dried spaghetti (quite tricky)

My handsome bunch!