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

A friend like Henry

I have just finished reading a book called 'a friend like Henry' By Nuala Gardner.  Its a book about a mothers journey with children with autism, main focus is on her son with severe autism and how a pet dog broke into her sons world and he began to learn to communicate.

I found the book an emotional read and it reminded me of the harrowing tantrums of the earlier days and the difficulties we had faced.  I could relate to the frustrations of other peoples comments, and the sadness how she had to fight for her sons diagnosis (as autism was not highly recognised back then).  This lady had to overcome many obstacles in her life but it gave me hope as i read through the book how her persistent effort really paid off and her son was able to mix well with society and had many great accomplishments.  Years later, when she finally was able to conceive again, her daughter was also diagnosed with autism but at the completely different end of the spectrum - which is where my son is.  She was amazed at how much had changed in terms of acceptance and diagnosing but its still a long waiting game.  This quote from the book, stood out for me:

'When we were facing the most challenging aspects of Dales behaviour all those years ago, I'm sure i we'd have jumped at the chance of dealing with a child at the opposite end of the autistic spectrum disorder, but Amys superior ability with language didn't necessarily make our lives any easier.  Because she was able to manipulate the situation or obsession and interrogate us about it..... this made handling Amy even harder.  With Dale once he was'programed' he adhered to family and school rules, which made dealing with him alot easier in the long run.  As far as Amy was concerned, you had to jump out of a cake to motivate her to do something and then let her eat it - or at least have a consistent reward system in place to reinforce the message.  We have therefore learned that it doesn't really matter what level of autism you are dealing with; it is how an individuals particular autistic traits impact on their life that is important'

I always remember thinking that my son wasn't that bad and thankfully he could verbally communicate so it was ok, it could be a lot worse.  Thats not really the case, we have many challenges because of his ability to be so verbal.  I remember someone telling me 'that its a bit like cancer in the sense that it doesn't matter whether its breast cancer or brain cancer at the end of the day its all cancer.  The same with autism - it doesn't matter which end of the spectrum its still autism'.  We have difficulties to face that other children do not, we have to adapt our approaches and have had to change our goal posts, in terms of what we expect.  It's hard when others meet him that have a set idea of what an autistic child should be like and then they dismiss it as he doesn't meet 'thier' criteria, but for that moment in time he may look like he's the same as any other child but actually you have no idea of the preparation and work we have had to go through in order to get him to that place.  There can be discrimination between whats expected between a verbal and non verbal asd child.  Just because they have words does not mean they communicate in the same way as everyone else and will have the same traits as a non verbal.  These traits can't be ignored just because they speak.

My son does have friends etc and we do meet up with other people but this is really hard work for him.  It is not natural for him to process the hidden meanings and facial aspects of communication.  It is not easy for him to meet new people or be in new surroundings.  He has to process all this information.  He does not have the social imagination to cope with different set ups of familiar surroundings.  He can find the sensory element of a new place overwhelming.  He has to work really hard at all of this and which is why he finds change really difficult.  He does become tired quickly and we find that short bursts of successful communication is better for all of us.  By short bursts I mean a morning or afternoon activity followed by rest and some time out.

Although the book was emotional to read I'm glad i did, it gave me a broader perspective of life on the spectrum and the end of the book was a summary of the experiences through Dales eyes.  Now a grown man he was able to verbalise why he did some of things he had done.  He was also able to communicate how grateful he was to his supportive network.  I do sometimes feel scared of what the future holds for us and for our son, whether a 'normal' life will be possible, so reading Dales perspective was very encouraging and showed how far he had come.  It is amazing to read what he had overcome and how it was achieved.

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....