Yesterday I came across a website for a charity called Brainwave based in Somerset. They aim to help children with complex needs like William to achieve their full potentential in a physical and cognitive sense.
How it works is that we would go there for 2 days initially, the first day would be spent carrying out an assessment of William and his current abilities. A programme would then be put together for him which would be explained to us during the second day so that we can go home and carry it out on a daily basis in his home environment. You then return every 4-6 months for a reassesment so they can see whether William has made any progress and adapt the programme accordingly.
Its sounds brilliant, the reviews I found online are all realy positive and it has given me new hope for him! They are sending me the information pack so I can put him on the waiting list, they're currently booking appointments for July so hopefully we'll get in during the summer and can make a holiday of it! It is quite expensive so I can see some fundraising may be required in the future! Sponsored run anyone!!??
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Just back from a check-up with the Paediatrician, she was pleased with Williams progress on the whole, made a few changes to his medications but nothing major so thats good news. She started the chat about education even though he isnt due to start school until September 2013 but because he's going to need a statement of education needs she needs to get him into the system sooner rather than later! She said that we'll probably start work on the statement around September next year - so thats something to look forward to NOT! (For those of you that havent heard of this, its a statutory document that has to be done for any child with any special needs to ensure that they have everything in place when they start in either a mainstream or specialist school. It details all the therapists that need to be involved, equipment etc etc)
The paediatrician also said we should start to think about having a meeting with her without William so we can discuss his future needs, medically etc as she forsees him having more medical problems than other boys of his age as he cannot fight off infections etc. I think its a bit soon to be worrying about things like that when things are going so well but the doctors always seem to bring you crashing back down when you think things are going well. And really, who knows what the future holds, yes I know William is not going to have the same life as an average child but he isnt average, but really we have got enough to worry about without having to worry about planning for things that havent happened yet surely?!
Anyway, enough of my ranting. Thank you for continuing to read my blog, I hope it is of some interest to you. Please feel free to pass it on if you think anyone else would be interested in reading about my lovely boy! xx
Wednesday 26 January 2011
Wednesday 19 January 2011
What a difference sleep makes!
I just wanted to write a quick update as William has been a joy to be around the past few days! Ive never known him so happy and relaxed and just generally in a good mood! He's been sleeping really well the past 4 nights or so, and that has obviously made a massive difference (to us both!)
Today when I collected him from nursery he was laying on his tummy over a bean bag with no over extension and was just relaxed and happy. Even when he smiled he managed to stay relaxed whereas smiling is usually something that triggers off his muscles and makes him arch backwards! The girls at the nursery said that he has been really good the past few sessions and has really enjoyed himself!
His new favourite things are 2 balloons that are at my Nan's house left over from my Auntie Rhondas 50th (sorry had to drop that in there so she feels old when she reads this!) the balloons are a bit deflated now so they're just about his eye level when he's laying on the floor and he loves them! He's been batting them and if they;re put into his hands he grips onto them and waves them about all over the place! They really make him smile! We're still staying at my Mums flat while the extensions being done so he's spent a lot of time with my Nan playing with the balloons this week!
Today when I collected him from nursery he was laying on his tummy over a bean bag with no over extension and was just relaxed and happy. Even when he smiled he managed to stay relaxed whereas smiling is usually something that triggers off his muscles and makes him arch backwards! The girls at the nursery said that he has been really good the past few sessions and has really enjoyed himself!
His new favourite things are 2 balloons that are at my Nan's house left over from my Auntie Rhondas 50th (sorry had to drop that in there so she feels old when she reads this!) the balloons are a bit deflated now so they're just about his eye level when he's laying on the floor and he loves them! He's been batting them and if they;re put into his hands he grips onto them and waves them about all over the place! They really make him smile! We're still staying at my Mums flat while the extensions being done so he's spent a lot of time with my Nan playing with the balloons this week!
We went along to a multi-sensory play session at East preston children and family centre at the weekend and it was really good - it was just for families with children who have additional needs. Kev came too and it was just lovely to spend a few hours playing with William in an environment where everything was suitable for him and we didnt have anything else to do other than entertain him! They've organised a few for the next couple of months so we'll definately go along to them.
Friday 14 January 2011
Fab christmas, now back to reality!
Well what a hectic few weeks! Theres been so much going on I have no idea where to start!
Christmas with William was fantastic, he was such a good boy! He woke up in the middle of the night on Christmas eve and ended up sleeping in with me & Kev but luckily Father Christmas knew to leave his stocking at the end of our bed! William seemed really interested in opening his presents and seeing all his new things, he was so spoilt though and we had so many presents under the tree that we had to save some for Boxing Day!
We spent Christmas Day at my Aunts house and William was so well behaved for the entire time it was incredible, he'd never be that good for so long usually! He even ate his Turkey dinner!
The Christmas break seemed really long and William did seem to get out of his usual routine, thankfully he is now back at nursery and school for parents and is starting to get back into a daily routine, he is definately one for routine though and gets rather distressed if things dont happen as he is expecting them to!
I made a decision before Christmas to take william out of his mainstream nursery and to get an extra session for him at Camelia Botnar instead. I just felt that he wasnt getting what I wanted him to get at his mainstream nursery and Camelia Botnar are better equiped to look after him, just such a shame that their funding is lacking and they can only offer 9am-12pm during term times now.
The nursery ladies noticed that William really liked Bing Crosby at Christmas so they took him on a little trip to the nursery this week to see if they could get another Bing Crosby CD for him to listen to! They have done some lovely things with William this week, and noticed a few good things that William has been doing. He has started to reach forward with both hands when they sing row row row your boat to him and after many loud bath time sessions with daddy, he also knows that "if you see a crocodile dont forget to scream!" and makes a loud noise at that point!
School for parents has also been really good so far this term and we've only had 2 sessions back so far! This week we went in the hydro pool with William, it was just myself, william and Chris the group leader. William was brilliant and did everything that was asked of him including looking for a toy in the water once it had been dropped in. He wore a floatation vest and loved it, he didnt stop kicking the whole time he was in there and for another 15 minutes after!
The rest of the session was spent in the class room and William was amazing. For the first time, he didnt cry once! Every week William has to sit on a low wooden bench with straps across his thighs and I support his back for him, he then holds on to a bar on the table in front of him. The first few weeks, William screamed as soon as he was put on the school and he couldnt tolerate it for more than a few minutes and was constantly pushing back (as usual!) But this week, he sat on the bench, held onto the bar and sat there without even a finger on his back for almost 5 minutes before he started to push backwards! Amazing how much he has progressed in a short amount of time. He even managed to sit on the bench for the whole of his snack time - about 20 minutes - and had his drink and biscuit on there which he has never managed before!
We've made huge progress on our extension and our lounge is pretty much finished apart from being decorated. This week William and I moved out to stay at my Mums flat as Kev has started knocking down the walls and making all the alterations to the rest of the house. It is a complete mess and I am so glad not to be there at the moment but it is really wierd (and lonely) without Kev with us - he stays at the house with Roxy!
William has been up and down this week - hes been happy enough in the mornings at nursery etc but come the afternoons he seems to get really windy and uncomfortable - last night he was up from 10.30pm - 3.30am just squirming about with his windy pains, poor boy I didnt even have any calpol to give him as we're at my mums! I am going to speak to his paediatrician about it again as its just ridiculous how bad it is, even the nursery have commented on how uncomfortable he gets with it. Surely there must be something they can do about it.
Tomorrow we're going to a multi-sensory session at East Preston children & family centre, should be interesting. Its being put on just for children with additional needs and they have taken on respite staff for the session so that the parents can have a cup of tea and relax for 5 minutes so I am looking forward to it!
We're still waiting for the head support for williams standing frame, which we've had for months now without it being of any use to him. I cant understand how the physio can make such a fuss about how important it is for william to have a standing frame and then not be bothered about him being about to use it! We have finally got an appointment for william to go to the posture clinic at Chailey though - thats next month - so hopefully we can get some seating organised for him as I cannot go on with feeding him on my lap!
Chestnut House - a charity based in Crawley - (not The Chestnut Tree hospice) are kindly organising a charity race night to raise money for some sensory equipment for williams new room. It is in April and will be in Crawley - more details to follow but if you are local, I would love to see you there!!
Christmas with William was fantastic, he was such a good boy! He woke up in the middle of the night on Christmas eve and ended up sleeping in with me & Kev but luckily Father Christmas knew to leave his stocking at the end of our bed! William seemed really interested in opening his presents and seeing all his new things, he was so spoilt though and we had so many presents under the tree that we had to save some for Boxing Day!
We spent Christmas Day at my Aunts house and William was so well behaved for the entire time it was incredible, he'd never be that good for so long usually! He even ate his Turkey dinner!
The Christmas break seemed really long and William did seem to get out of his usual routine, thankfully he is now back at nursery and school for parents and is starting to get back into a daily routine, he is definately one for routine though and gets rather distressed if things dont happen as he is expecting them to!
I made a decision before Christmas to take william out of his mainstream nursery and to get an extra session for him at Camelia Botnar instead. I just felt that he wasnt getting what I wanted him to get at his mainstream nursery and Camelia Botnar are better equiped to look after him, just such a shame that their funding is lacking and they can only offer 9am-12pm during term times now.
The nursery ladies noticed that William really liked Bing Crosby at Christmas so they took him on a little trip to the nursery this week to see if they could get another Bing Crosby CD for him to listen to! They have done some lovely things with William this week, and noticed a few good things that William has been doing. He has started to reach forward with both hands when they sing row row row your boat to him and after many loud bath time sessions with daddy, he also knows that "if you see a crocodile dont forget to scream!" and makes a loud noise at that point!
School for parents has also been really good so far this term and we've only had 2 sessions back so far! This week we went in the hydro pool with William, it was just myself, william and Chris the group leader. William was brilliant and did everything that was asked of him including looking for a toy in the water once it had been dropped in. He wore a floatation vest and loved it, he didnt stop kicking the whole time he was in there and for another 15 minutes after!
The rest of the session was spent in the class room and William was amazing. For the first time, he didnt cry once! Every week William has to sit on a low wooden bench with straps across his thighs and I support his back for him, he then holds on to a bar on the table in front of him. The first few weeks, William screamed as soon as he was put on the school and he couldnt tolerate it for more than a few minutes and was constantly pushing back (as usual!) But this week, he sat on the bench, held onto the bar and sat there without even a finger on his back for almost 5 minutes before he started to push backwards! Amazing how much he has progressed in a short amount of time. He even managed to sit on the bench for the whole of his snack time - about 20 minutes - and had his drink and biscuit on there which he has never managed before!
We've made huge progress on our extension and our lounge is pretty much finished apart from being decorated. This week William and I moved out to stay at my Mums flat as Kev has started knocking down the walls and making all the alterations to the rest of the house. It is a complete mess and I am so glad not to be there at the moment but it is really wierd (and lonely) without Kev with us - he stays at the house with Roxy!
William has been up and down this week - hes been happy enough in the mornings at nursery etc but come the afternoons he seems to get really windy and uncomfortable - last night he was up from 10.30pm - 3.30am just squirming about with his windy pains, poor boy I didnt even have any calpol to give him as we're at my mums! I am going to speak to his paediatrician about it again as its just ridiculous how bad it is, even the nursery have commented on how uncomfortable he gets with it. Surely there must be something they can do about it.
Tomorrow we're going to a multi-sensory session at East Preston children & family centre, should be interesting. Its being put on just for children with additional needs and they have taken on respite staff for the session so that the parents can have a cup of tea and relax for 5 minutes so I am looking forward to it!
We're still waiting for the head support for williams standing frame, which we've had for months now without it being of any use to him. I cant understand how the physio can make such a fuss about how important it is for william to have a standing frame and then not be bothered about him being about to use it! We have finally got an appointment for william to go to the posture clinic at Chailey though - thats next month - so hopefully we can get some seating organised for him as I cannot go on with feeding him on my lap!
Chestnut House - a charity based in Crawley - (not The Chestnut Tree hospice) are kindly organising a charity race night to raise money for some sensory equipment for williams new room. It is in April and will be in Crawley - more details to follow but if you are local, I would love to see you there!!
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