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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This blog is written about the Son-Rise program we run for our autistic son Ben. He is 7 years old and has recently started to talk, he can express what he wants now and understands most of what we say. More info on our website www.hopeforben.com
Tuesday, December 1, 2009
Wednesday, October 21, 2009
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.
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
Monday, October 12, 2009
Wet shoes, tantrums and parties :)
Ben had a fun weekend in sefton park. He has started to say words to describe what he sees, it's really amazing to hear him spontaneously point something out. For example when we are driving in the car he says swing, slide and park when we pass them, and at the weekend he said garden when we went over the fly over and could see houses with gardens down below.
On our last trip to sefton park he finished with the swings and wanted to cross the road and walk in the park, so we gave it a go. When we reached the brow of a hill he saw steps and liked them, I knew this because he shouted 'stairs.' The only challenge was that as we came further over the hill he realised there was a lake in the way! He walked right to the edge, looked over and for a minute I thought he was going in. I managed to coax him to walk around a bit until we found stepping stones and some more stairs hurray. The walking up and down the stairs game was fun but he all of a sudden ran back to the stepping stones and jumped into the water in between them. Had to carry him back to the car because he wouldn't walk in wet shoes :)
We stayed in Jim's the weekend and he was very good, a bit confused but good.
When we got home on Sunday though he was not happy. He threw tantrums all day, then today when he got up the first thing he said was park. We were going to a party at 4 so I said no play first park later when we go out in the car. It didn't go down well to say the least and so started a day of tantrums :) This is a great day for learning as we worked all day on responses. I really felt by the time he had calmed down and we had a little play (about 2 o'clock) that he understood that his tantrums were not a good way to communicate but that he had the choice of what behaviour he was going to use.
Charlies party was fun, Charlie is so cute and his sister Bronte is lovely. Ben ran in and wanted to go on the big slide, I ended up going in and showing him the way to it and was amazed to watch him do it again and again on his own. Good job Ben. He then started to explore different ways to go and even climbed up onto the top level. He got stuck once and I had to rescue him but it didn't put him off. The funniest thing was a couple of men had gone in to play with a toddler and left their shoes by the side of the slide. Ben thought this was just plain wrong and kept moving them, I kept putting them back but the men were only seeing me with their shoes and missing Ben every time. I got very strange looks! By the time we left he had sat in the party room with all the other kids and eaten chips, even though the music was really loud. He only pushed a couple of kids which is great and they were play fighting with each other so I like to think he was joining in :) Thanks autie Debbie for being so nice to us.
The best thing was after we had gone to the park on the way home he came back into the house without throwing a tantrum like he usually does. Well done Ben for learning that today :)
xxxx
On our last trip to sefton park he finished with the swings and wanted to cross the road and walk in the park, so we gave it a go. When we reached the brow of a hill he saw steps and liked them, I knew this because he shouted 'stairs.' The only challenge was that as we came further over the hill he realised there was a lake in the way! He walked right to the edge, looked over and for a minute I thought he was going in. I managed to coax him to walk around a bit until we found stepping stones and some more stairs hurray. The walking up and down the stairs game was fun but he all of a sudden ran back to the stepping stones and jumped into the water in between them. Had to carry him back to the car because he wouldn't walk in wet shoes :)
We stayed in Jim's the weekend and he was very good, a bit confused but good.
When we got home on Sunday though he was not happy. He threw tantrums all day, then today when he got up the first thing he said was park. We were going to a party at 4 so I said no play first park later when we go out in the car. It didn't go down well to say the least and so started a day of tantrums :) This is a great day for learning as we worked all day on responses. I really felt by the time he had calmed down and we had a little play (about 2 o'clock) that he understood that his tantrums were not a good way to communicate but that he had the choice of what behaviour he was going to use.
Charlies party was fun, Charlie is so cute and his sister Bronte is lovely. Ben ran in and wanted to go on the big slide, I ended up going in and showing him the way to it and was amazed to watch him do it again and again on his own. Good job Ben. He then started to explore different ways to go and even climbed up onto the top level. He got stuck once and I had to rescue him but it didn't put him off. The funniest thing was a couple of men had gone in to play with a toddler and left their shoes by the side of the slide. Ben thought this was just plain wrong and kept moving them, I kept putting them back but the men were only seeing me with their shoes and missing Ben every time. I got very strange looks! By the time we left he had sat in the party room with all the other kids and eaten chips, even though the music was really loud. He only pushed a couple of kids which is great and they were play fighting with each other so I like to think he was joining in :) Thanks autie Debbie for being so nice to us.
The best thing was after we had gone to the park on the way home he came back into the house without throwing a tantrum like he usually does. Well done Ben for learning that today :)
xxxx
Thursday, October 8, 2009
Bread!
Haven't written for a couple of days because have been a bit hectic. Ben pinched some bread and had a big bite, very pleased he was too. It wasn't a great decision but he doesn't realise he's on a gluten and casein free diet :)
He went all spaced out for a few hours, which was really weird and then got a bad tummy ache which kept him up until half twelve, poor lamb. His stomach must be much much stronger now after 12 months of the diet, as the symptoms only lasted a day and he was back to normal.
I met a lovely girl called Julia on Tuesday, she seemed really nice and friendly and said she liked the look of our program and was eager to start. Got to get some training sorted now!
Ben has had 1 trip to the park this week and was on form making friends, he was playing a sort of chase and hide and seek game with a boy about the same age, then he hugged a little girl that he particularly likes. It was really cute.
He had his first session with a new volunteer called Anna on Wednesday. He absolutely loved her, straight away he went up to his play room and as soon as she celebrated his eye contact he knew she was a play person and she was pushed straight into the room!
Laura is coming to do a session tomorrow to say bye bye as she is leaving to concentrate on her studies. I will try not to cry but she has become part of the family and we will miss her terribly !
Over the last few weeks when Ben really wants something or wants to go somewhere he has started to put his hand on my chin and come really close to my face. He then makes the shape of the word he wants to say really slowly so that I am in not doubt what it is, like as if he is giving me speech therapy, it's really funny and very effective.
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He went all spaced out for a few hours, which was really weird and then got a bad tummy ache which kept him up until half twelve, poor lamb. His stomach must be much much stronger now after 12 months of the diet, as the symptoms only lasted a day and he was back to normal.
I met a lovely girl called Julia on Tuesday, she seemed really nice and friendly and said she liked the look of our program and was eager to start. Got to get some training sorted now!
Ben has had 1 trip to the park this week and was on form making friends, he was playing a sort of chase and hide and seek game with a boy about the same age, then he hugged a little girl that he particularly likes. It was really cute.
He had his first session with a new volunteer called Anna on Wednesday. He absolutely loved her, straight away he went up to his play room and as soon as she celebrated his eye contact he knew she was a play person and she was pushed straight into the room!
Laura is coming to do a session tomorrow to say bye bye as she is leaving to concentrate on her studies. I will try not to cry but she has become part of the family and we will miss her terribly !
Over the last few weeks when Ben really wants something or wants to go somewhere he has started to put his hand on my chin and come really close to my face. He then makes the shape of the word he wants to say really slowly so that I am in not doubt what it is, like as if he is giving me speech therapy, it's really funny and very effective.
xxxxxxxxxxx
Monday, October 5, 2009
Nice calm day.
Ben has been in a really calm mood today, we played first thing this morning for an hour and had great fun. It was very slap stick :) the games Ben thinks of are far more fun than mine! He again wanted to play with the cube/dice but he put a new spin on it himself by including it in all the other games we play. So for example when we were bouncing with the coats on our heads he would get the cube and press a button saying sneeze or cough and want me to cough or sneeze on the coats. How cool is that?
I went to put posters up in Hope university this afternoon and was expecting him tobe upset but he was really calm and happy to be in with his grandma. Anne-Marie played as well in the afternoon and he was very happy to see her. He loves his volunteers :)
Am meeting a girl called Julia tomorrow, another prospective volunteer, so ope it goes well.
Off to try bed time, at the moment I go up at 9 and sit there for 2 and a half hours until he falls asleep! Been getting him up early but it doesn't seem to make any difference :)
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I went to put posters up in Hope university this afternoon and was expecting him tobe upset but he was really calm and happy to be in with his grandma. Anne-Marie played as well in the afternoon and he was very happy to see her. He loves his volunteers :)
Am meeting a girl called Julia tomorrow, another prospective volunteer, so ope it goes well.
Off to try bed time, at the moment I go up at 9 and sit there for 2 and a half hours until he falls asleep! Been getting him up early but it doesn't seem to make any difference :)
xxxxxxxxx
Sunday, October 4, 2009
Park or No Park?
Today has been an interesting day :) Ben woke up in a great mood and we played in the playroom for a couple of hours in the morning. I had a rethink about the falling down game and decided that if he had to press a button on me, that would be like pushing me and that's something I've been trying to stop him doing. So I made buttons for the wall, couldn't get him interested though and we ended up playing the dice game again. I'm not complaining about that because it's great that he wants to play it so much.
In the afternoon we went in the car to the park, it had been raining and the slides were wet. There was no one in the park when we arrived so I used the paper towel from the car to dry them :) I know thats really sad, but after about ten minutes lots of kids appeared because the rain had stopped. I'm sure they would have appreciated my slide drying if I had been odd enough to tell them about it!
Ben followed a toddler around for about ten minutes trying to straighten her trousers as they were crumpled on top of her welly :) She was really freeaked out in the end and I had to stop her and strighten it before he rugby tackled her. He just can't stand clothes to be in the wrong places and the leaves, oh they are so in all the wrong places!
He had a great time then a friend called Karen turned up with her lovely son Daniel. Ben was not amused, he doesn't seem to like me speaking to people at all especially in the park. He was so annoyed he headed out of the park, I thought he was going towards the car but he ran like mad down the street. I always try not to grab him as it upsets him so much, so I jogged beside him hoping he would turn around. In the end though I had to because he started to try and dodge past me into the road. Once I had hold of him he went beserk so it seemed a long walk back to the car!
He got quite upset when we got back to the house as well and it took him about half an hour to calm himself down. We finally got back to playing about 4 o'clock.
I'm thinking about whether or not going to the park is a good idea now, he has been really good all summer and it's been great for me as I've met lots of people and had a chance to talk to adults :) Something has changed though and Ben seems to be pretty unhappy every time we get home and sometimes while we are there. I'm finding it hard to decide what to do as I like going to the park and I know that Ben wants to go, even though he has trouble coming home.
I'm playing first tomorrow then Anne-Marie, then I have to decide whether we go to the park or I try and encourage him into the playroom again. It's a good job he's so cute.
xxx
In the afternoon we went in the car to the park, it had been raining and the slides were wet. There was no one in the park when we arrived so I used the paper towel from the car to dry them :) I know thats really sad, but after about ten minutes lots of kids appeared because the rain had stopped. I'm sure they would have appreciated my slide drying if I had been odd enough to tell them about it!
Ben followed a toddler around for about ten minutes trying to straighten her trousers as they were crumpled on top of her welly :) She was really freeaked out in the end and I had to stop her and strighten it before he rugby tackled her. He just can't stand clothes to be in the wrong places and the leaves, oh they are so in all the wrong places!
He had a great time then a friend called Karen turned up with her lovely son Daniel. Ben was not amused, he doesn't seem to like me speaking to people at all especially in the park. He was so annoyed he headed out of the park, I thought he was going towards the car but he ran like mad down the street. I always try not to grab him as it upsets him so much, so I jogged beside him hoping he would turn around. In the end though I had to because he started to try and dodge past me into the road. Once I had hold of him he went beserk so it seemed a long walk back to the car!
He got quite upset when we got back to the house as well and it took him about half an hour to calm himself down. We finally got back to playing about 4 o'clock.
I'm thinking about whether or not going to the park is a good idea now, he has been really good all summer and it's been great for me as I've met lots of people and had a chance to talk to adults :) Something has changed though and Ben seems to be pretty unhappy every time we get home and sometimes while we are there. I'm finding it hard to decide what to do as I like going to the park and I know that Ben wants to go, even though he has trouble coming home.
I'm playing first tomorrow then Anne-Marie, then I have to decide whether we go to the park or I try and encourage him into the playroom again. It's a good job he's so cute.
xxx
Friday, October 2, 2009
Themes?
Ben has been in a great mood today. We were in the playroom before our first volunteer Eamonn arrived!
We have noticed that Ben has started to have times in the playroom where he is neither isming nor really doing anything. It's almost as if he's waiting for us to do something, just kind of wandering around. Both Eamonn and I have been suprised by these times and wasted them not knowing what to do. So we have decided that these times are great 'introducing our theme times' hard work ahead making up some more fun games to play.
Lately we have been designing most of our themes around coughing, hiccuping, sneezing etc. so I think a change might be good. Was thinking of maybe having a button on my front that makes me fall over and one on my back that makes me stand up - he loves slap stick. Just an idea but will give it a try tomorrow morning.
The park was a little empty today because of the weather so not many potential play mates, it's much more fun in the park now that Ben doesn't hit other kids any more. He still occasionally has a moody day where he pushes kids who are in his way but fingers crossed they are getting less and less. Ben enjoyed himself anyway though-----
We have noticed that Ben has started to have times in the playroom where he is neither isming nor really doing anything. It's almost as if he's waiting for us to do something, just kind of wandering around. Both Eamonn and I have been suprised by these times and wasted them not knowing what to do. So we have decided that these times are great 'introducing our theme times' hard work ahead making up some more fun games to play.
Lately we have been designing most of our themes around coughing, hiccuping, sneezing etc. so I think a change might be good. Was thinking of maybe having a button on my front that makes me fall over and one on my back that makes me stand up - he loves slap stick. Just an idea but will give it a try tomorrow morning.
The park was a little empty today because of the weather so not many potential play mates, it's much more fun in the park now that Ben doesn't hit other kids any more. He still occasionally has a moody day where he pushes kids who are in his way but fingers crossed they are getting less and less. Ben enjoyed himself anyway though-----
Thursday, October 1, 2009
Welcome to Ben's son-rise blog
I'm hoping to update this blog most days to let all of Ben's friends and family know how his program is going from day to day.
Eamonn and Aisha have been playing today and Ben has had a great time.
I had to put a new lockable door knob on the play room yesterday as, during his session with Aisha yesterday morning, he managed to waggle the door enough for the bolt at the top to come loose. He didn't know what to do but decided that the session must be over if the door will open and shut and proceeded to say 'bye bye' to Aisha and bring her downstairs.
During our session in the playroom this afternoon Ben played with our dice theme for fifteen minutes! He said 'cough,' 'sneeze,' and tried to say 'hiccup' and pressed the buttons on the dice. We've been trying to decide whether he knows which words are which as he gets it right quite a lot, I'm happy to believe he can pick the right one until proved wrong :)
Our trip to the park this evening was also fun, Ben found a boy of about the same age and made eye contact, he smiled at him and said something that seemed to be in his own language. The other boy smiled back and they ran around the park together for a while. It was really nice, I can't wait for him to have more words to say to other children
xxx
Eamonn and Aisha have been playing today and Ben has had a great time.
I had to put a new lockable door knob on the play room yesterday as, during his session with Aisha yesterday morning, he managed to waggle the door enough for the bolt at the top to come loose. He didn't know what to do but decided that the session must be over if the door will open and shut and proceeded to say 'bye bye' to Aisha and bring her downstairs.
During our session in the playroom this afternoon Ben played with our dice theme for fifteen minutes! He said 'cough,' 'sneeze,' and tried to say 'hiccup' and pressed the buttons on the dice. We've been trying to decide whether he knows which words are which as he gets it right quite a lot, I'm happy to believe he can pick the right one until proved wrong :)
Our trip to the park this evening was also fun, Ben found a boy of about the same age and made eye contact, he smiled at him and said something that seemed to be in his own language. The other boy smiled back and they ran around the park together for a while. It was really nice, I can't wait for him to have more words to say to other children
xxx
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