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Saturday, 27 September 2014

A week of extremes

Last Friday Seth came home with a certificate from school assembly. He had received the most stars for his work than any other child at school for that week. Very proud! But we suffered for it at home. He was shattered and at home he was struggling with the simple things - he was too tired to eat breakfast so we had to send him into school with his breakfast packaged up several mornings. We are only a couple of weeks into the new school term so hopefully he will adjust soon!

Giggles Play, the sensory and soft play centre I am setting up has been a lot of work as well. We've received some funding to purchase equipment and insurance, including £5,000 from Northamptonshire Community Foundation, which is fantastic. I have more applications pending, including a £500 grant from Skipton Building Society's Grassroots Giving. We are shortlisted and now it's down to public vote. If you haven't done so already, please vote for us by visiting our profile page. We also had a fundraising swish on Thursday and raised over £200 and it was a really fun night.

The most important news is that Giggles Play has launched a crowd fund project to raise the money for a van. It's called 'Van for Giggles Play' and if you read this blog then please visit the site and pledge. We've got £10,000 to raise in 4 weeks and if successful it will put the 'portable' in 'portable play centre'! I've had a bit of a crisis with PayPal not working properly, so I've gone from being so excited to complete despair. After I've published this post I need to go back into PayPal and work out what I need to fix. I think I'm going to have to post documents to prove we're a real organisation! In the meantime, please support us and pledge!

Monday, 15 September 2014

Seth sees colours!

Seth and I were playing with a shape sorter. It's a lovely wooden toy that a friend bought for Seth a couple of years ago and every so often it comes out of the toy box. If Seth is on form he really enjoys playing with it but often he objects to it so I pick my times carefully.

Yesterday, he seemed very happy to be sitting in his chair so I brought it out. I did the usual, scattering the coloured shapes onto his tray and asking him to choose one. He then moves his right arm to nudge one and I post it into the sorter for him.

This time, however, I realised that the colour he chose was the same colour as the side of the sorter that was facing him. I praised him and turned the sorter over to show a new side. He then, in turn, chose the correct colour shape that matched the side that was facing him! At one point he even lifted up his left arm, which he rarely uses, and landed his hand on the yellow shape - correctly selecting the correct colour.

We went through it twice and I was so excited before Seth seemed to get weary of it and then ended up sleeping most of the afternoon so it obviously took it out of him. But it was amazing and he has never before shown so clearly that he can distinguish between colours. Coming after the 'severely visually impaired' diagnosis, it does show how cortical visual impairement is so changeable! I wish I had video footage to share but I wasn't going to stop playing to mess about with my camera! We'll just to do again soon!

Saturday, 30 August 2014

Let down by Occupational Therapy

I'm feeling let down by Occupational Therapy. We had the same OT for a few years and whilst it always took a while to get equipment I always felt that our needs were responded to. I actually felt bad listening to other mum's who talked about the lack of support they felt and the equipment they didn't receive whilst we always got everything we needed.

However, our OT was seconded to support a different team and we were assigned a technician. She's very nice and says 'ooh' and 'ah' when she comes to visit but we've had the same crappy chair that is not fit for purpose and nobody seems to be doing anything about it. This chair, which is a Breezi-max, is a wooden chair. It was chosen because it has no wheels and it doesn't change height. This means that there is less movement to encourage Seth to bounce or rock when he's in it. So I get that. However, when it arrived it had no padding and so Seth would slam his head back against the wooden headrest. We complained, several times. It was very distressing for me to watch him hurt himself and they finally came and removed the head rest entirely. So Seth simply continued to throw his head back, seeing how far he could fling it back. This was equally distressing. He would throw his head back if we tried to leave him, when his meal was over, when he didn't want to be in the chair anymore, even, increasingly, during meals.

In addition, the tray didn't fit properly. There was a massive gap which allowed his food to fall into his lap when he ate. It was so big that if I tried to put a toy onto the tray, if Seth did play with it it would fall into the gap.

After several phone calls I was advised to stop using the chair. Useful! We had a couple of review visits with the Breezi Max sales rep and then, finally, months later a new, padded headrest arrived and padding that we could fix around the tray which filled the gap and made it more comfortable against Seth's tummy when he rocked (because he still rocks, even though he doesn't get the same feedback as he did from his previous chairs). But after a couple of months of use it just keeps falling off. By now we've had the chair for over a year and I've learnt to really dislike it. The lack of wheels means that I have to carry it if I want Seth to be in the same room as me, and it's a heavy piece of wood - even without Seth in it. If I try to drag it, it scratches the wooden floor. Either that or I have to leave him in the living room whilst I go into the kitchen. It doesn't hurt him to be alone every so often but how am I supposed to read his body language and voice tones to communicate with him if we're at different ends of the house? Plus, whilst it all being wood makes it easier to keep clean, I wouldn't want to sit in a chair like that for long, so how can I expect Seth to tolerate sitting in it longer than he has to?

I've explained that I'm really not happy with the chair and we need a proper review. So now they've just stopped phoning. I suppose it's time for me to phone and complain again!

On a positive note, today we played with some gadgets that Speech & Language gave us. They installed some software onto my laptop and a piece of hardware that allows us to use a switch, instead of  a mouse or keyboard. Here is a video of Seth playing with it :)




Sunday, 24 August 2014

I'm getting lots of cuddles from a very weary boy!

We're having a very quiet bank holiday. Seth seems to be growing a new tooth, although I can't see where. As he hasn't lost one it must be at the back which explains how much he is suffering.

Yesterday he spent the afternoon asleep after having a melt down at lunchtime. He was so tired but every time he took a bite of the sandwich he just screamed. I can only assume that his gums are hurting. Today I managed to get Seth to eat his lunch and then we had a lovely cuddle on the sofa where he fell asleep in my arms. I carried him to bed and again he slept the afternoon away. When he woke we discovered he'd had a poorly tummy and the poo had soaked through his nappy and trousers. Lovely! He wasn't bothered though and he even tolerated being showered which bodes well for the wet room we are hopefully having installed sometime before the end of the year.

It's a problem though because we've got the breathing excercises we're supposed to be carrying out each day, we've got all these speech and language toys that we've been lent for the summer holiday and we've also just been given these wrist splints that we are supposed to be building up his tolerance too. & he's just so sleepy and grumpy at the moment that we are spending a lot of time just cuddling. It's lovely but I feel guilty that we're not doing all this stuff. I know that's silly because if that's all he's up to then that's all we should be doing. But it always sounds lame when you get to the end of the holidays and you have to explain why you didn't anything! We have managed to fit in using some of the toys and actually just doing it for a few minutes is suiting Seth better and he's really enjoyed using a switch to turn a lamp on and to make a whizzy light toy light up.

We did manage to do the breathing excercises every day for over a month. But then Seth didn't want to lie still for them and it got harder to do. I really wanted to do them for the full 3 months so we could evaluate if they were having an effect. Certainly, I haven't seen any change and apparently even in that short space of time we should have seen something. I have to say I've become a little sceptical. It does seem a broad brush approach for such a diverse range of special needs children, including children with autism. I'm sure some children really benefit from it, and certainly my friend's child really seems to be enjoying and responding to the excercises. I would like to try to begin fitting them in again, though, so we can at least say we properly gave it a go.


Tuesday, 15 July 2014

Eye tests at the Great Ormond Street hospital

Today we went to Great Ormond Street Hospital. It was a referral we had requested for more detailed eye tests. Seth has had annual eye tests since he was was born virtually and he was officially diagnosed with 'immature' eye sight, as part of his global development delay. However, these tests haven't told us anything really useful and are really only intended to show any change year on year. We know that the problem lies with the brain damage Seth suffered at birth and how the signal from the eyes is interpreted by the brain. The tests did tell us he had stigmatism and the glasses were diagnosed to help with this in the hopes it might help him see a little. & we think that they have improved his focus.

Seth's eyesight is definitely intermittent. He uses his vision more: he will look for sounds, rather than just stilling to listen but he will often still turn his face away from sounds so that he can focus on his hearing. He looks into our faces loads more and we get lovely eye contact very often, but similarly sometimes Seth will appear to completely ignore us, not even vocalising in response.

Anyway, today we spent the afternoon at GOSH. The specific test we were after was a bit like his EEG's, in that they glued electric sensors to the back of his head and a couple on his face. They then rolled a big tv up in front of him with Something Special playing on it. On reflection, maybe I should have got them to move it closer because as I told them, he doesn't watch TV at home, he listens to it. The TV programme continued to play as they overlaid the picture with different patterns, and flashing lights. The sensors then recorded what signal was being sent back to the brain from the eyes. It can tell how good the signal is and whether one eye is stronger than the other. It was really hard to get Seth to look at the screen at all (which is pretty telling in itself!). We literally had to hold his head up with another woman shaking noisy toys in front of the screen to try to get Seth to look at it. Seth looked up only enough for them to get a basic reading. Not enough to be able to go into the detail of which side was better than the other, but enough to show that the signal that is getting through is really not good at all.

We now have a proper diagnosis that Seth is severely visually impaired and we will be getting a certificate in the post to prove it. On the plus side, I think this means we can claim for a free tv license. Also, rather more importantly it also proves that when we told the CDC (Child Development Centre) that the cognitive tests they carried out when Seth was almost two were ridiculous and their conclusion that his cognitive ability was of a 3 month old was not taking into account his visual impairment is now vindicated and his cognitive ability could well be pretty good. On the not so good side, we've just done this Aided Communication course in the hopes that he will learn to eye point to signs in order to communicate, and maybe one day use eye pointing technology to speak for him. & it's unlikely he can actually see the detail on the signs.

Sunday, 29 June 2014

International day of dance

This weekend we went camping. It wasn't wholly successful; we went to the Peak District and of course I've never been in the Peak District when it wasn't raining and it didn't disappoint.

We arrived quite late Friday evening, Seth was overtired and couldn't wind to sleep for hours. Then he woke up at 5 and I don't think he went back to sleep. So he spent the day very tired and grizzly, so much so that after tea time I was so worried about a terrible night that we packed up and came home. I don't know, given that all he wanted was sleep it might have been fine but I wasn't sorry to wake up in my own bed this morning.


Seth chills out in the tent

Despite how this sounds we actually had a fun time. The rain actually held off in the afternoon and we went into Bakewell. And that was when we discovered it was International Day of Dance. At least that's what the signs said and every corner we turned, there was different styles of music and random groups of people dancing. Naturally, Seth loved the music. The first group we encountered were line dancing, the second were swing dancing and the third were a group singing South African songs. Seth had a good bop and I found myself dancing my way round the town.

We haven't been put off camping. We've just learnt a few more lessons for next time. :)

Monday, 23 June 2014

The importance of breathing

Last week we spent 3 days in East Grinstead, Sussex, at the Advance Centre learning the Scotson Technique. I learnt about it from a friend, who in turn learnt about it from a friend. We camped near by using my parents campervan at Sumners Pond Fishing & Campsite and I heartily recommend them. Fab facilities, 2 disabled showers and really friendly staff.

At the centre we learnt about how the respiratory system develops in a new born baby and how children with neurological problems suffer with underdeveloped systems, especially if they need to be on ventilation. If a child isn't mobile their already suffering respiratory system suffers further as the normal small, movements that a 'mainstream' baby makes slowly builds their lungs and diaghrams. So a child born with difficulties falls further behind in a vicious circle; not getting the oxygen supply around their body they need to their brain and joints, not having as much energy to move and so not increasing their oxygen supply etc etc. Their underdeveloped diaphragm can be seen in physical abnormalities and posture; flared ribs, sunken chest and high shoulder blades.

So the science I understand. Seth has these physical attributes. They took photos so we have a benchmark later. Linda Scotson has a son with cerebal palsy,she developed the Scotson Technique on her son and she attributes his ability to not only walk but run marathons on the work she has done with him. She says that it will help posture, speech, mobility and eating. Linda also explained how the diaphragm aids digestion. The technique is gentle, slow rhythmical pressure on different parts of the diaphragm. You use a rolled up flannel so that it is soft and prevents you pressing too hard. It needs to be done every day and takes over an hour to complete the routine. We have to go back in 3 months to review Seth's progress and learn new elements to the routine, and we do this for the next couple of years. A charity paid for the cost of our first sessions and we have to apply to another charity to pay for the rest.

It all sounds pretty amazing and there is anecdotal evidence of real improvement for children after treatment. The big question of course is 'was it this that helped, or would they have improved anyway'? It's the 6 million dollar question, isn't it! Linda is completing a PhD on her technique which is due to be published and peer reviewed but this is the main problem with any therapy like this. You don't have a base group to compare findings against to be able isolate this therapy as being the cause of change. I do think that Seth is making enormous leaps forward at the moment. I think this is because of the epilepsy medicine either helping him to sleep and so giving him more energy in the day and/or calming his head so he can concentrate more. He's also loads more mobile; he uses his walker to get to and from the school bus and we try to walk with him round the house as much as possible. This is turn will be improving his lung capacity, blood and oxygen circulation and energy. We will just have to take note of where he is now, and again in 3 months and take a view whether this new therapy has caused improvements then.

On that note, I have 2 videos of Seth walking up and down our stairs to and from his bath. Unfortunately, I chose to wear a dress on this day and had to hitch it up to walk back down the stairs with Seth- I apologise now for the ungainly view of my legs you are forced to endure!



Anyway, I'm not advocating the Scotson Technique but it's worth checking out. Linda reckons that it is helpful to all children who were born with difficulties, can be started at any age and is also helpful for children with autism. After all this, on Friday we had the second day of our communication course. We practised using aided communication and discussed how we could use it and develop it with our children. Another useful day and by the end of this week my mind was blown and I was knackered.