Ben's Boot Camp!

Ben seems to think I need to get in shape, he's not far wrong to be honest :)

He's started a boot camp for me to attempt to get me fit. This morning so far it's been a 7am start with a leisurely bounce on the trampoline on the garden 7:30 in for breakfast. Porridge for me as Ben has eaten most of everything else breakfasty, and shopping doesn't come until tomorrow morning :)

Ben gets to watch the tv whilst he has his breakfast but I'm not allowed as it's best to keep the boot camp mentality so every time I open my laptop he shuts it! Managed to get a quick peek on facebook while he wasn't checking though :)

Then its 8:30 and off to the playroom for some chasing like a monster games. He's got a new challenge for me this week though he wants me to jog on the spot kicking my heels back, with the play clothes on my head obviously, but the new twist is he wants me to hold them right up above my head at full reach.

When I put them down a bit he shouts 'no no up' he's clearly got fed up of my bingo wings and decided to take action! Every so often we have to lie down with our heads under the trampoline, then all of a sudden it's up again for more exercise. Interval training is a firm favourite with Ben.

10:30 and it's back out onto the trampoline in the garden, this time I have to 'bounce high' though and even have to pull my knees in to my chest aaahhhh!

11:00 and it must be break time as he's got me off the trampoline and gone back into the garden without me. Hoping I get at least an hour before the next lot of gruelling exercises!!

Ben offers his services free of charge to anyone who would like to get fit!! Only a few important criteria -

• Must have good comedy cry, cough, hiccup, sneeze
• Must appreciate how fab Ben's eyes, speech, flexibility are.
• Must have 2 x 2hrs to spare to get fit every week.
• Must be good fun!

If you want to give it a try see our website www.hopeforben.com for details :)

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Keep your eye on the ball!! Or else!!!

It's been a tiring week but very productive. Ben has only had 4 2hr sessions with volunteers this week so I've been doing a lot of the playing. It's been great fun but pretty tiring as its been play, park, play, park etc.

Ben has started to progress in the playroom with his toilet training and has actually done a wee (with pants off and in tub) for both Amy and Jade. Yay!

His language has also made a big leap this week. He recently started to point things out to us like 'sky' 'shoes' 'car' etc. which was great as his language was no longer just functional but conversational as well. But this week he has moved on a little more and has a couple of times pointed and said 'what is it?' quite clearly! He is babbling a lot now as well and sometimes in amongst all that chunnering there are some sentences.

The best one at the moment is 'pick it up please.' This is a new game he's started plying with me where he puts a cup on the floor, not sure why it's a cup, then he wants me to say pick it up please. Then when he picks it up I have to say 'oh thank you Ben.'

You might be wondering how I know what to say, well he said it first and pointed at me! How amazed was I?

Stay Alert Mum!

I don't know about other parents with autistic children but I know that I can't take my eye off the ball for a second without 'something' happening. An unfortunate event as I like to call them :)

I'm tired this morning after a migraine yesterday and most defiantly not at my best. So I'm doing the dishes, bit daydreamy, and he's already done a poo this morning, and he has just done a wee so I think I'm safe :)

Next minute Ben comes into the kitchen, from being upstairs for ten minutes, completely naked, covered in poo and says 'help me' in a really timid little voice.

I didn't know whether to laugh or cry!

Park Friends Please! :(

We haven't been to the park this morning as I got myself a bit upset yesterday when we were there. Ben is really trying to make friends with other kids. He's going up to them and getting some eye contact and giving them a big smile, then he says something unintelligible and the kid normally runs away and hides by their mum. He sometimes continues to follow them around and in the end they start saying 'stop following me' which he doesn't understand!

He started to get a bit upset yesterday about it and ended up wanting to go home. He just hasn't got the language skills yet, but it breaks my heart. I'm really hoping he keeps trying though cos I'm sure it won't be long before he can start to talk to them.

Ok off to make the sunday roast xxxxxxxxxxxxxxxxx if I can stay awake *yawn* xxxxxxxxx

oooh nearly forgot Ben has put the toothbrush in his mouth and brushed his tongue and a couple of teeth for about 4secs 3times now!! Smiling as he does it, keeping my fingers crossed its not a flash in the pan!

He has also been letting me have a short (Or sometimes long, sorry Dave!) chat with volunteers after their sessions yay!

Personal Space in the park :)

Just back from our late afternoon trip to the park. Ben decided to adjust all the kids trousers as they were going up the slide :) Standing at the bottom he diligently made sure that everyones trousers were laying flat on the backs of their shoes!

I distracted him away to the swings before anyone got too upset about it :)

It's funny how important these aesthetic things are to him when he will happily run around with tomato sauce all over his face!

Jade was in the playroom this morning and did a great job of getting some wee in the toilet, think he is getting more comfortable with the toilet in the playroom now so fingers crossed we will see some more progress.

I tried my 'where shall I tickle' game today. I've drawn (really badly) a picture of a boy and put arrows to places to tickle like hand belly etc. The game is to point to where he wants me to tickle. Didn't go down a storm and he didn't play it but let me have the picture and let me point to the places a couple of times before he said back and pointed to the shelf.

Will try again tomorrow - adjustments might be to weave it in instead of initiating it !! Will let you know :) xx

Robo Remote and Manic behaviour

£30 worth of remote controls Ben has smashed over the past 3months!! So with the latest one, That I've cobbled together using bits of the old ones, I'm taking no chances-

Duck tape and polystyrene are my best friends :) He wasn't too happy with it but he seemed to reason that this remote is better than no remote!

Ben's been really manic the last few days. Going from being really quiet to laughing, gasping and shouting in an hysterical fashion. At first I got a bit panicky and kind of joined in the mood but I've been trying to take it in my stride and have joined him when he's done it in our play sessions. It's hard not to get all worked up when I'm doing though so hoping it doesn't last long!

I've been working mostly on Ben saying two words together this week, and getting them to sound like two words not just one long one. So 'coats head' when he wants me to put the dressing up coats on my head and bounce and 'bite arm' when he wants some sensory input :) He's doing quite well.

It works better with Ben if instead of requesting explicitly you act like you don't understand. So when he says head, instead of putting the coats on my head like I would normally I've been saying 'great job saying head this is my head yay!' and he's had to say 'coats' and then 'head' to explain what he means.

Got to go now or I might have a house full of wee!!!

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Toilet Training

Trying to start blogging again to help me to clear my head of a night :) Not sure if I'll keep it up but worth a go!

Well for the last, what seems like million weeks, but is only really about 6 weeks, I've been doing some toilet training with Ben. It started purely on a whim when I had a whole day without any volunteers. We had had a long play session and I felt that I should use rest of the day to do something more useful than just letting him wander around the house getting into mischief!

Now heres what usually happens - I hide all the nappies and tell Ben 'oh no, we've run out of nappies you'll have to wear these underpants like a big boy' He then throws a massive tantrum and secretly wee's anytime I'm not looking. By bedtime I fold and give him the nappies back.

So this is what I was expecting, but after 10mins he was happily wearing the underpants and I had idea what I was going to do next. I'd never got to this part!

I had to send my mum out for more underpants as I only had about 3 pair and in the first two hours they had all been weed on! Then he decided that only trunk style ones would do so Amy, one of his volunteers, got me some from next. As buttons are the devil (according to Ben) boxer shorts are also out of the question!

During the first week I think I lost the will to live and was very close to a nervous breakdown. Every time I moved away from him he weed on something and while I was cleaning it up he would go and wee on something else.

My fabric couch smelt like the animal house at the zoo and the hall/stairs/landing carpet wasn't far behind.

I pleaded for help on facebook and luckily a couple of amazing teachers from the Autism Treatment Centre of America posted very helpful comments. So the plan was to catch the wee and get it in the toilet so he knows that wee goes in something!

So to cut a very long story a bit shorter :) At the moment Ben is getting closer to being toilet trained. He crouches on the floor to wee so it has proved very difficult to catch the wee in anything. So we have these little plastic boxes! Like tupperware!

If I prompt him when I think he needs a wee he will now take his underpants off ( He crouches so low if he doesn't take all his bottoms off he wees on them) and wee in the tub. We then have to do comedy hiccups to throw it into the toilet! Then when all the wee is in the toilet we have to cry because it's gone, again in comedy fashion :)

I even have to do this when we are out, We use the disabled toilet because Ben is terrified of hand dryers, but can you imagine what people must think :)

He is dry of a night and is mostly great when we are out of the house as long as we make regular toilet trips. In the house if I'm on the ball all the time then he is great, but if I'm a bit dozy or not paying attention then we end up with accidents. He's not great in the playroom yet but he has done a few wees for Amy and Jade.

I've re-covered the couch with vinyl and bought lino offcuts for the landing so I'm not as stressed about accidents.

The biggest learning I have taken from all this is that if I want to be really comfortable with the accidents I have to really believe its ok when he wees on something. When the couch was fabric and the carpet was uncovered, even though I pretended, I wasn't really comfortable when he had an accident and started to get really snappy and irritable. As soon as I solved that problem I immediately relaxed and so did Ben. Pretending to have a belief doesn't work!!

Hoping when Holly visits in September she will get us going in the right direction so we can help him to move on and eventually be able to wee in the toilet!

More updates soon xxxx

long time no blog!!

So much has happened since the last time I wrote this! We have had an outreach from the lovely Sarah Darque :) Ben has met lots of new volunteers and we have tackled the dreaded 2am bedtime!

Outreach

Having an outreach visit from Sarah really made an impact on our program. It was so nice to have someone to give me some feedback and so full of amazing ideas for playroom themes.
We have now started to introduce themes into the playroom in a big way. My theme at the moment is buses and bus wheels, Ben loves them so I've been printing out lots of pictures of wheels and building cardboard buses for him etc. It's given him the option to use his imagination in a way I never thought he would. It's great to see him so excited about a game that I have brought into the room and even when he only looks at it for a while then goes back to his own games, it feels so precious to have that little window of flexibility.
Sarah has helped a lot showing us how to introduce a new game into the room and it has made our program so much more fun.

volunteers

Since the beginning of September I have been recruiting new volunteers from the universities. Ben loves to meet new people and he has been busy building relationships with his eight new volunteers. This brings our total at the moment to 12! I am always amazed at how many people want to spend time helping Ben and it is easy to feel grateful to them when I see his progress.
I hope to include some volunteer profiles on the website before Christmas.

Bedtime

For a while now bedtimes have been getting out of hand, I began to feel helpless and stuck in a cycle of going to bed at 2am and getting up at half past 10 in the morning. We would go up to bed and Ben would just jump up and down on his bed until he finally fell asleep exhausted. I think I got to the point where I was so tired I couldn't think straight, and it was only when I started having to almost drag him out of bed to start our program in the mornings that I realised how out of hand bedtime had become.
A couple of weeks ago I decided to put my foot down and read all I could on the son-rise web site on sleep and bedtimes :)
The plan started with me taking him up to bed at 9 (and making sure no one else was going to wander upstairs and disturb us!) I read with hm for 15mins then said it was time for bed and sellotaped the light switch off!
He got up over and over and I spent the next 3hrs putting him back in bed over and over again. It was really hard to be passive as he was kicking me and hitting me in the end. I never move him about when he doesn't want to be moved so this was quite hard to do!
Eventually though he got the message and laid down and asked me to lay on the bed next to him, he fell asleep about half 12 which was amazing compared to 2 o'clock.
The next night we did the same again but this time it was only an hour of putting him back into bed and he fell asleep at half 11.
After that it just kept getting better :) He now knows that we go upstairs at half 8 read or play quietly for 15mins then switch the light off and go to sleep. He is usually asleep by half 9 and always by 10.
I honestly didn't think it would work and am still waiting for the rebellion. In fact I feel that it was me that caused the 2am bedtime by not setting the boundaries properly, Ben really didn't know when he was supposed to go to sleep.
Bedtime has gone from a nightmare to a dream and I am so thankful again for the son-rise program and all their wonderful staff :)

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Noticing the trees

Noticing the trees was an amazing moment in the park at the weekend. Ben walked up to a tree stroked it, looked at me and said 'tree.' I was so amazed and grateful that he had taken an interest in them and startled that he knew what they were called. I know that sounds silly but he doesn't look as if he is taking any notice of me when I talk most of the time, so for him to have learnt the name for a tree and to want to share that with me is awesome :)

We have been going for walks without the big pram as well this weekend, Ben has found great ways to relax when he gets tired, like sitting on the floor and even riding on grandmas trolley.

He is really enjoying his playroom at the moment and enjoying it when his volunteers come to play. He is so excited now in the mornings when someone comes he runs upstairs with a big grin on his face and says things like 'great look' and 'well done Ben' It's so cute that he appreciates our praise so much hes started to give it back to us.

Looking forward to Sarah Dargue coming next week to help us with our feedback and training. Sure Ben will love her as well.

xxxx