Wednesday, 24 December 2014

That's teamwork

When Seth was born Craig and I became a team. We didn't consciously do it but we grew more dependent on each other and became tied by even stronger bonds than as a couple we had had before. We got married a few years later and had the mightiest of celebrations of that partnership.

When the three of us are out we have a choreographed dance; for navigating doors/ pavements/ people, responding to Seth's needs and sharing a meal with Seth. I especially like how when eating out we will take it in turns to eat so that Seth's food is chopped up, cooled and then given to him without one of us getting too hungry. Obviously, we have enough times when the dance turns into more of a battle but more times than not we are in sync.

But the team falls down when we are all ill! In fact these past few days I've been trapped under a duvet with my head full of feverish thoughts realising that we've been going about things wrong. We were so happy to strip away the level of equipment support as Seth needed it less but we've missed a vital point. That we should plan for the worst contingency, not the best. Because this week I haven't had the strength to carry Seth around but, being poorly too, he's refused to walk and in fact been pretty much a dead weight. We don't have a chair that we can move Seth around in the house anymore so there is no alternative. And carrying Seth upstairs for a bath at the end of the day?! Ha!

It has made me acutely aware of how dependent Seth is on us. If Craig or I don't get up out of bed in the morning then Seth doesn't move. It doesn't matter how tired, ill or worn out we are - Seth can't climb out of bed, he can't reach for a drink, he can't do anything but lie in a nappy that he's worn all night, trapped in a room alone.

Well we are getting a wet room hopefully February and we are getting a replacement chair. Our lack of suitable chair for Seth has been holding up our respite and so a replacement has been rushed through but with no consultation from us. I've been so busy I was almost tempted to let that happen given our need for respite but this week has reminded me how important the equipment we have is and there is no way we should allow a new chair - something that Seth and us could be very reliant on at times - to be chosen without any input from us. Even a month's delay to our respite will be worth us not being saddled with another rubbish chair for the next two years!

Sunday, 14 December 2014

Seth turns 7 and has his Christmas Concert - but it's a frightening time for young people with learning disabilities

I read an article on the Mencap website, on Friday. It was how a 23 year old man with a learning disability died because his care plan wasn't followed by the supported living service he was, unhappily, living in. Nico was born with cerebral palsey and later diagnosed with profound and multiple learning difficulties. Nico was moved because his local authority stopped funding his school placement because they "deemed his care package to be too expensive", even though his family and experts in the field warned that the alternative placement could not meet his complex needs.

According to Mencap in research they conducted in 2013, over 1200 children and adults die across England every year because they are not getting the right healthcare.

Seth turned 7 two weeks ago. We had a lovely party and I'm so proud of how he is growing up. He stands much straighter now, showing off how tall he is. He's starting to move his arms and hands in a new way and is able to hold onto items now. We have frustrations with some services and equipment but on the whole the system has worked for us and for Seth. Hi school in particular - Friday was the school Christmas Concert and he was a star on stage bopping to the music in 70's garb (yes that is a dancing reindeer behind him!)

But what happens when he turns 16 and leaves children's services? Most of the time I don't think about it - it's a long way off and why worry about something that's not relevant right now when there is enough to worry about that is? But everything I do now is with one eye on the future - I'm terrified that Seth will be reliant on others for his basic needs. I'm trying to teach him to feed himself and I'm trying to potty train him so that he will have some control over the very basics of his life. When his older I want him to be able to experience leaving home and live in a community where he is with his peers, continuing to learn, having fun and stimulated. I know at least one place in England like this but I imagine its places are hotly contested and expensive.

The description of Nico in the Mencap article reminded me of Seth and exemplifies all the fears I have for Seth's future. Entirely vulnerable to the whims of the Local Authority budget and a system that continually fails the most vulnerable.

Tuesday, 11 November 2014

Trips to the hospital and lovely cuddles

The other weekend Seth came into bed with us for a lie-in.

He started off sitting between us and then snuggled down and rolled into Craig. It was so lovely! In the past when we've tried sharing our bed with Seth so that we can enjoy a lie in together he hasn't relaxed at all and mostly just got upset wondering why we weren't giving him breakfast. It hasn't been an enjoyable experience at all. But he's grown up quite a bit since then!

In fact he has seemed particularly sharp these last couple of weeks; being more helpful when getting dressed and, at bedtime, lying back and opening his mouth when I tell him it's time for his medicine. He's really listening and responding. And he's being very interactive with Craig and me. It's a real joy.

Which is a nice counterbalance with how poorly he's been these last few weeks. I'm not sure if he picked up a bug over the half term week but he definitely was struggling. He didn't want to walk at all and when sitting on the floor would start to fall sideways! He also had a rather explosive bottom! The dentist also told us Seth is cutting two adult molars at the moment so whether it was a combination of factors but despite the medication he's on Seth had a fit at home the weekend after half term and then last Thursday school called an ambulance because he was having clusters of fits. Apparently today he has fitted again as well.

Obviously, the drive to school last Thursday was quite stressful - Seth hasn't had clusters of fits since he was 3 and so I was slightly panicking about it's implication. The ambulance technician had to give Seth diazepam to bring him round and that's never happened before. The worst bit though was when, in A&E, they tried to take blood from Seth and after 3 different failed attempts to draw blood they then stuck a needle into Seth's wrist and kept wriggling it around trying to find the vein with Seth squirming and complaining clearly in pain and increasing distress. After getting more and more anxious trying to hold Seth still I made them stop. I shouldn't have let it even get that far - I know now that I will make them wait for a paediatric specialist if we are in that situation again. We made it to Paddington assessment unit but by then Seth was completely fine and eventually we simply went home. No one there felt it necessary to take any blood thankfully, as it is Seth's left hand and arm is covered in bruises. Although they don't appear to bother him.

I'd forgotten how utterly draining the hospital experience is, although that is something to be thankful for - that it is infrequent enough that I can forget.

Friday, 10 October 2014


We are meeting our potential respite family for the second time tomorrow. They've been arranged through Family Link and we've already been to their house once. We've been offered 2 nights a month and it will replace the 3 hours a week we were getting from Direct Payments.

We have been so conflicted about getting respite. On the one hand we asked for it because of the lack of sleep; Seth frequently wakes in the night. Sometimes he will just chat to himself, sometimes he will be laughing and sometimes he will be very upset. I think that since it's been realised that he has fits during the night and is on medication, his sleep has improved but it can still be quite unsettled. So, getting a couple of nights decent sleep - even the potential of going away for a night - is amazing. More than that, it's the idea of having a morning to ourselves. To be able to eat breakfast without having to feed and care for another person at the same time. Wow! We get really excited about the prospect.

But, leaving your child with another family? Especially a child so vulnerable is ridiculous surely!

This couple has been offering respite for children for years and they are experienced with children with a range of different needs. I was a little put off when I was told that they would only offer us a family who had downstairs accommodation and this couple were the only couple who had downstairs accommodation (so not much choice for us, then. You can say no to these but we don't know when anyone else suitable will come along!). However, they seemed really nice and we felt reassured.

So, now they come to us for a second visit. We've started properly thinking about what we can do with a night without Seth. But the reality? How do you do that?!

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.

Monday, 16 June 2014

We went to the zoo

Last weekend we went to Whipsnade Zoo for their Special Kids day. It's discounted entry and they have speical events such as sensory story and singing hands. They've held a special kids day at London Zoo for several years and we went to it a couple of years ago but this was the first year they extended it to Whipsnade.

It was a lovely day. We started with a senosry story; the children sat on beanbags in a darkened room. Twinkly lights were hung around and a member of staff told a story of the rainforest and the different creatures that were there. Se and her colleagues walked around the children with different materials to simulate the different animals, butterfileds 'landed' on hands and as night fell in the story, the lights were dimmed and 'fireflies' appeared on the ceiling.

It was really well done and just at the right level for Seth. When it finished we made our way to the sea lions just in time for a show. Seth sat right at the front with other wheelchairs...and got soaked when the sea lions grabbed hoses in their mouths and sprayed the audience with water. Talk about a sensory experience! He seemed a little taken aback by the experience but otherwise was quite happy.

I think his favourite bit though was eating ice was very good ice cream! It was a really lovely day and I really hope they do it again next year.

Today for Fathers Day, Seth took Craig round Salcey Forest for a Grufallo Hunt. We saw owl and snake but managed to completely miss the Gruffalo! Not sure how that happened; presumably fox was there too. Still, a good exuse to go back....

Saturday, 7 June 2014

Seth and I start talking to each other!

Yesterday Craig and I attended a course organised by the Speech & Language Therapists. There were a mix of parents, teachers and support workers. It was all day and there is a 2nd day, and a further morning in a couple of weeks.

What frustrates me the most at the moment is our inability to understand Seth's wishes. We interpret a lot of very subtle body language and so get by on that. However, he bangs his head a lot which I believe is often related to frustration at not being understand, and a much easier way of saying 'no', even though we don't actually know what he wants instead, or often even what he's actually saying 'no' to!

We've signed with Seth for years, tried objects of reference and switches but don't feel any of this is actually working. Seth's visual impairment doesn't help with this. Not knowing what he can actually see means we don't know what will work best for him. My goal for this course was to come away with a toolkit that will enable us to apply a consistent method of giving him choices that he can respond to. And I think we're going to get just that.

The morning of the course was spent watching a presentation on why communication is so important but an appreciation on why communication aids can be difficult and frustrating to use, there was some group discussion and we watched a couple of amazing videos of children and adults with no, or limited speech, who were using both low and high tech symbol boards to effectively communicate. It was very inspiring.

In the afternoon we discussed the 5 stages that our children progress through and the core language for each stage. For Seth, who is at stage 1, we simply need to start with the 'more' and 'stop' symbol. It could take months to get the hang of it but once he has we can expand the language and symbols. By the end of the course we will have created our own personalised boards to take home with us.

I have learnt that asking him questions isn't enough. I need to be continually commenting on his subtle body language telling him how I think he's responding to my question. I need to give him time to process my question. And then I need to continually point to the appropriate symbol. They called it 'modelling'. The idea is that, in time, Seth will understand the symbols and learn that if he eye points to them he will be able to clearly tell me what he wants. I'm quite excited about this. I knew all of this kind of before but I've now had a step by step instruction on how to do it. Today we have already started. We didn't have the symbols with us but I kept up that commentary, asking him a question and then saying 'I think that you want....' and things like that. Normally I would still read that body language but by voicing it back to Seth I was telling him that I understand what he was 'saying'. I really felt a difference and he seemed a lot more relaxed. I also noticed a lot more than I would have before, I think.  So I asked him a question and he tapped his foot and I read that as a response, rather than just a random movement. So I told him that I thought he was saying 'yes' and he laughed. It made me aware that he was communicating to me a lot more than I had ever realised which really is very exciting.

Friday, 23 May 2014

Epilepsy Week and my son's epilepsy

This week is Epilepsy Week and Epilepsy Action is focusing on diagnosis. They are asking people to share their stories of being diagnosed with epilepsy. All week they have been raising awareness of epilepsy and what support is available.

You can follow their activities through Twitter @epilepsyaction and Facebook.

Our first experience of epilepsy was when Seth was born. A friend of mine had had it as a child but I had never seen it for myself and I thought that having epilepsy meant having one of those seizures where you writhe around on the floor, foaming at the mouth. That's what I learnt from television.

As soon as Seth was born he was having seizures. I can't even remember the name of them now and it made him judder. To be honest, as a new mum I probably wouldn't have even realised it was out of the ordinary if the hospital staff hadn't explained that it was him experiencing a seizure. Medication quickly supressed them and by the time he was home, 10 days later, the episodes were passing and the medicine could be withdrawn.

Then 8 months later it all started again. This time he was having infantile seizures. I remember Seth would just suddenly throw his arms out. At the time Seth didn't really move at all so this was quite a shock. He would then be sick and go unconcious.  Another significant thing about these seizures was that a couple of months before they began Seth had been so unhappy. He cried a lot and I found it increasingly difficult to go out and join in the parent toddler classes because he would just cry throughout. However, when the first seizure happened it was like a storm cleared. Seth was happier and calmer. Every time he had a seizure he always seemed brighter and more responsive, at odds with how dangerous they potentially were. Steroids controlled these but Seth's weight just piled on. The side affect of the drug increased his appetite. I hadn't appreciated it at the time and it's only looking back at photos that I appreciate quite how big he became. The consultant explained that this type of seizure is particularly dangerous for Seth because it prevents cognitive development and wipes out any development already gained. Luckily we were on the lowest dose and it was proving effective. As his weight increased, the proportion of drug in his system was reducing without any sign of the seizures and so about 6 months later we cautiously stopped the medicine.

The following year Seth began to experience seizures again. They took all forms and Seth had a number of EEG's to monitor his brain activity. In fact, we were the first people to try out their new videoing equipment and it proved enlightening. We had told our consultant that we thought Seth was fitting. We described what we were seeing (some upper arm movement and stiffening, followed by sleep which made us worry the infantile seizures were back) and so were booked in for the EEG. During the test Seth didn't do what we had been seeing, however, by comparing the video with the brain activity they identified that he was having frequent seizures, the outward sign of which was simply looking down to the left. We had our own video evidence of what we had seen (from our mobile phones) and so it was identified that he was experiencing different, frequent, seizures throughout the day. As they weren't doing him any harm; were only lasting a few seconds and weren't upsetting him, we decided not to medicate but simply monitor it. Over the following 6-8 months Seth continued to have seizures which went from the frequent looking down and brief absences to a couple of full body tonic-clonic ones.  Sometimes he was sleepy afterwards and sometimes he just took them in his stride. They were usually precipitated by a sensory stimulating experience and music and eating were the biggest causes of an episode. We were introduced to the epilepsy nurse and how we should handle Seth's seizures. They increased in frequency and even scared us enough to call an ambulance once, so we were poised to make the decision to start medication again....and then they just stopped.

When Seth started school the seizures started again. During the first week of each new term, Seth would have a cluster of small fits and absences but, again, these reduced until for a couple of years he would have just one, or two small fits a month when he was particularly tired or feeling poorly. We became more relaxed about it all.

At the beginning of this year, however, it was identified that Seth was having frequent fits during the night and so we were all agreed that medication was required. The meds don't seem to be having any undesirable side effects. Seth isn't spaced out, a common side effect I have always worried about. He's on the lowest dose and I'm in no hurry to take him off this time. He's a happy boy, learning new things, at his pace, all the time. And I've learnt that epilepsy is a complicated diagnosis.

Sunday, 18 May 2014

horse riding and play centres

Seth had horse riding yesterday morning, as usual. This lesson was different, though. It was so warm in the building that the organisers decided that the horses could go for a walk. The other reason it was different was that as they were short on helpers I offered to walk alongside the horse (they have one person leading the horse and 2 people either side to support the child). At first I was very nervous as Seth moved alarmingly from side to side as the horse walked. However, I soon got the hang of it and Seth was very happy to be outside. I think it was the best session ever. Normally the horses are led around in a circle and up and down the area they use. However, because we were on a walk, it wasn't as stop and start and Seth seemed better able to get used to the horse's movement and adjust his balance. Whilst he did keep sliding slowly to one side, overall his back was much straighter and he sat really well.

Seth is just generally fab. He now uses his walker to walk to the school bus, and then on into school (and back at the end of the day). I am hopeful that one day he might actually walk unaided. He's even started to weight bear through his hands. It's a very small but significant step forward.

I've been crazy busy with Giggles Play; the sensory & soft play centre I mentioned in a previous blog. It's actually happening! It's incorporated as a Community Interest Company and at the moment I'm completing funding applications. It's all being held up by the painfully slow process of setting up a business bank account. The plan is to go 'mobile' for at least the first year and assuming my applications are successful, aim to 'open' in November. It will be nicely timed for Seth's birthday; I'll probably be it's first customer but will nicely showcase it's potential for birthday parties!

Monday, 21 April 2014

My son the musician

Seth likes his music. He loves listening to it and making musical sounds. Seth sits in a supportive chair with an attachable tray, or at a table, so we can put his toys within easy reach. Whilst he enjoys free sitting on the floor he doesn't have the control over his hands to play when he does this. Plus he's always rocking or moving so most things we put on his lap fall off pretty quickly.

I used to get frustrated that I couldn't get a toy to stay on his lap, however, I do use it as an opportunity for him to use his feet and legs. In fact more recently, we've come to realise that a lot of his movement is quite deliberate. So we bought him a roll out keyboard which he plays with his feet. And he drums with his feet, too. Especially in the car. The other day we were driving and we had The Who playing. Seth went crazy. All I could hear was a very excited boy and feet drumming against the passenger seat in front of him. Next time I'll pull over and video him!

If Seth is sitting on the floor and we put a toy on his lap he will wriggle and bounce until the toy is under his legs. Some lovely friends of ours bought Seth a toy guitar for Christmas. Whilst we've had fun playing with it, we hadn't had much luck getting Seth to play it. However, I was giving it to him with the expectation that he would use his hands. Last week I adjusted my thinking. Seth was sitting on the floor and after watching him wriggle a keyboard-type toy off his lap and under his thighs to play it, I put the guitar under his legs:

Sunday, 30 March 2014

What a mothers day!

Today I was watching my son with the awe, pride and joy of a parent with a newborn.

I don't often get the chance to really watch Seth. I'm usually to busy 'doing'. We spent the morning with my parents and then, on a whim, we decided to all go to lunch together as the local indian restaurant was doing a buffet lunch and surprisingly it wasn't packed with families celebrating mothers day. Seth had already had a carpet picnic (what I call feeding him a sandwich while he free sits on the floor) but I gave him some of the milder food from my plate and, as expected, he wolfed it down. I gave him the food because when we sat down at the table he immediately looked up at the lights in the ceiling and then around him, taking him the noise of people eating and talking. He then began sucking on his finger. I tried offering him a drink but he was in a place of eating and he wanted a part of it!

Whilst I then anticipated his expectation for a desert, I didn't order it quite soon enough because as we sat eating and talking, Seth started banging his head back against the head rest of his wheelchair. This is the behaviour that upsets me the most; it's Seth's 'no'. He does it when his meal is over, when he's in pain, when he is frustrated, you get the idea. He will continue to bang his head onto whatever is behind him, until he starts really crying because he's hurt himself. However, today whilst he was hitting his head, it wasn't very hard and there was a glimmer of a smile on his face. It reminded me of a friend's 3 year old I saw recently who misbehaved because we were talking and she wasn't the centre of attention. My mum went to Seth, crouched down next to him to talk to him softly. He kept his head down, listening, and then when she walked back to her seat he lifted his head to track her movements. It was pretty magical to watch. Then ice cream arrived and Seth was kept amused for a while.

Tonight when I undressed Seth for his bath, he started to wee. This happens every so often and I quickly scooped him into the bath. But instead of letting me sit him down he started to get upset. Not crying but his expression whilst he stood there made me transfer him to the toilet. With his slim hips he needs a lot of support or he slips straight in so I wrapped my arms around his torso and held him and he did a little wee and laughed. We stayed for a few minutes before I returned him to the bath where he lay back and enjoyed splashing in the shallow water. He's got a cold and his ears were bothering him (presumably itching) so, in turn, he lifted his hands and rubbed his ears. I realised that I don't think I'd seen him do it with both hands before and that his control of his hands and his manual dexterity was really improving. As well as his obvious awareness that he should wee in a toilet and his desire to do so.

All that in a day! Seth has gradually been increasing the epilepsy medicine he was prescribed last month. Craig has a review with the doctor about the meds tomorrow and he'll be reporting that things are definitely improving!

Wednesday, 19 March 2014

Shopping trolley wars

A couple of months ago I posted about adapted shopping trolleys and wrote an open letter to the major UK supermarkets. I got a response. Tesco replied to my tweet, asking for the details of my local Tesco so that they could pass on my plea for a shopping trolley that is adapted for disabled children. They did say they couldn't promise anything and, indeed, I have yet to hear from my local store. However, I was impressed that they replied; I heard nothing from the others (Morrisons, Sainsburys and ASDA).

I also got a response from Leckey, the manufacturer who created the amazing walker that Seth uses and the new Firefly range of supportive seating that they have produced in conjunction with Cerebra, that I just can't stop going on about. Leckey told me that they are talking with Tesco about a new trolley solution. Very exciting!

And then earlier this week it was discussed on the BBC Radio 4 programme You and Yours. The interview goes shopping with Stacey Lewis, mum of disabled child May and fellow blogger (I'm not jealous in the least ;) ). Stacey discusses the difficulties she experiences shopping with May and the responses she got when she contacted the major supermarkets. It seems, in the most part, supermarkets respond to individual requests if you make enough fuss. The response is then tailored to your individual need but that seems a pretty shortsighted response by supermarkets. I think our aim should be to make it standard across the UK. According to Scope, 1 in 400 children are affected by cerebral palsy alone. In addition, to this are children with an undiagnosed disorder (SWAN) and the children with a diagnosed genetic disorder. I'm confident that the majority of these parents, if not all, would have found an adaptive shopping trolley useful at some point.

So come on supermarkets, make it happen!

Thursday, 6 March 2014

This is my duck

Today is World Book Day and the children at Seth's school were invited to come in dressed as a character from their favourite book. I would say that Seth's favourite book is 'This is my duck'. It has featured on this blog at least once in the past. It's a touchy-feely book with a button that you press to hear the duck say 'quack quack' before turning each page. Seth has had it for years and because the button is too difficult for him to press we now use a recordable switch alongside the button. Seth gets great delight from pressing the switch to contribute the 'quack quack' as I read him the story.
Seth reads with mummy

I'm not traditionally a very 'crafty' person but I was determined to make Seth a duck costume. I hadn't realised til this morning how much it made me feel like a normal mum. To simplify things Craig cut up an old towel and dyed it yellow (oh yes, it was a team effort!). Then last night I sewed on the 2 wings, a fluffy tummy and cut out orange felt for the webbed feet and beak. We even had a couple of yellow feathers for the tail. I didn't think Seth would tolerate his new beak but he thought it was all very funny.

daddy and Seth dressed as a duck

Seth in class showing off his wings and tail

Seth 'the duck' sits down in class

Sunday, 2 February 2014

We lose one lot of medicine, and gain another

It's been a good weekend. I've given up using Seth's constipation medicine because I couldn't get a happy balance; he spent most of his time with painful wind and when it came to 'number 2s' we either had a 'drought' or a 'flood'. So, the past few weeks I've been concentrating on his diet. We keep a diary of everything he eats, any time he has a lot of pain and every time he poos. Plus how he sleeps. That way we can see what might be triggering the problems. I found out that bananas are not good for someone who is constipated, which was a shock because Seth ate a lot of those. And this weekend he seemed more relaxed and happy than for a while, so maybe it's working.

I also started an epilepsy diary before Christmas. For the last few months of last year we had seen a few seizures and a couple even at night. They were also lasting up to 2 minutes. I've posted before about Seth's epilepsy; over the last few years it has been sporadical and it's un-medicated. I wasn't overly concerned about these new incidents, but they were not connected to him being particularly ill and I wanted to keep a track of them. I mentioned it Seth's consultant and he set us up with an another ambulatory EEG. I was happy about this but as I had not had anything to put in the diary since I started using it I was worried about crying wolf. However, the report from the 24-hour monitoring came back last week and apparently Seth is having 'many unwitnessed seizures, in wake and sleep'. It informed us that during the night Seth woke up about midnight, a minute later had a seizure lasting over a minute and then remained awake until 5. So not only did he have a seizure we had no idea about but he was awake for over 4 hours! Having finally fallen asleep he woke up again at 5.20. However, I think this was only briefly because the report then says he woke again at 7. But then comes the real kicker. Seth then had 3 further seizures each lasting between 1 and 2 minutes between 7 and 7.30.

And there was further brain activity later during that day that could have been seizure related. And we had no idea. No wonder he is so tired and grumpy if this is happening regularly! So, the upshot it he is going on medication. It's a worry, but he's still being very clever..

Saturday, 25 January 2014

The talking point this week is working mums, but what about the dads?

I posted earlier this week about a mum of a child with additional needs being interviewed on Radio 4's 'Woman's Hour'. Well, being a working mum, I missed it but looked on the BBC iPlayer and discovered that the programme actually featured a working mum on the Tuesday and Wednesday shows as well. So I listened to all three:

On Monday Hannah talked about her daughter Rosie who has autism and how she had to start her own business Rosie and Bo because she could not find an employer to accommodate the flexible working she needed. On Tuesday Gill explained how she set up the Pulp Friction Smoothie Bar with her daughter Jess, who has Downs Syndrome, to give her work experience. Finally, on Wednesday, Linda talked about her experiences, having a celebrated paralympic athlete for a son and her work at the Papworth Trust. In addition Chris who has cerebral palsy talked about being given the opportunity to go to college and become independent. I heartily recommend you listen for yourselves; it's not often we get to hear our experiences in the mainstream media. Two quotes stand out for me: that employment and disabled children are like oil and water. The other was a comment about how charities tend to promote images that engender sympathy in order to fundraise but that we don't want sympathy for our child or for ourselves.

If you go to the Woman's Hour website you can select the episodes in turn. I got confused by the description of the show because it doesn't mention anything about special needs but you just have to select 20th, 21st and 22nd then trust me the interviews are part of the show.

For myself, I work 26 hours a week. 3 days I'm in the office which is an hours drive from home. Then I work 2 mornings from home. I can do this because I have a job that I can do from home but more importantly because I have an employer that has tried to accommodate my needs every since I came back from maternity leave. They have been incredible and I know just how lucky I am. I can also do this because I have very supportive parents who look after Seth 3 days a week after school. The level of support I get is not the typical situation for any parent, let alone a parent of a child with additional needs.

The main difficulty is the distance from home. When Seth threw himself backwards at school, slamming his head and ending up in hospital I was over an hour away from him. Craig works just 15 minutes from home and school but finds it difficult getting the time off. Being closer it would make more sense for him to take more appointments, and be able to be more involved. However, his employer seems to have no understanding of the impact of having a child with additional needs has on him and whilst my job actually gives me some respite from being a carer Craig is now off with depression due to the stress of trying to juggle both roles. Is the only solution for one parent to give up work entirely and take the 'carer' role and the other to just bring in the money? A 'standard' modern family can expect to make a choice about this. But in our cases, unless you are very lucky, its pretty much enforced. Even with Seth being as healthy as he is the number of appointments we still attend is very awkward to juggle even with the understanding employer, and manager, that I've got.

Going back to Hannah from the interview on Monday, she also has a guest post on Special Needs Jungle in which she continues on the subject of working and how the tendency is for the mum to become the stay at home parent/carer and the dad has to work, often long hours. Whilst I applaud the subject of working mums, whose going to interview the dads?

Thursday, 23 January 2014

You mean shopping with a disabled child doesn't have to be a nightmare?!

I've just read a post from one of my favourite blogs 'Love That Max' written by Max's mum, Ellen.

The post shares the story of a mum in Winsconsin who wrote to her local stores telling them how difficult it was to shop with her one and a half year old son who has cerebal palsy and asked if they could purchase a Carolines Cart which is an adapted shopping trolley developed by another ingenious mum of a child with additional needs. The cart costs just $850 (about £515) . Within a week one store had simply bought one. Talk about ensuring customer loyalty! You can read the whole post here.

Well I think we should take a lesson from Sandy and so here's my open letter to Tesco, Sainsburys, Morrisons and ASDA (feel free to copy):

"Dear Sir/Madam

My son (Seth) is 6 years old and is physically disabled. He has needed to use supportive seating from birth and so was never able to use the child seats you fit onto your shopping trollies. Shopping became extremely difficult as I have to push him in his wheelchair with one hand and pull the trolley with the other. I tried using the wheelchair adapted trolleys but they are designed for adults in wheelchairs and don't fit.

Yes, I could get my shopping delivered but my son actually loves shopping; the bright lights, the food smells and especially the checkout beeps. Plus, as a parent of a child with additional needs I can sometimes feel isolated enough without another reason to keep me indoors. I have also tried asking for assistance with my shopping but I'm uncomfortable having a stranger trailing around after me.

The reason for this letter is to ask if you could provide adaptive seating in your shopping trolleys. One has been developed called the GoTo Seat. It fits into your existing shopping trolley child seat offering that vital extra support for disabled children. This only goes up to 2yrs old, however, so maybe you could provide some R&D support to produce your own adapted trolleys like Carolines Cart?

Yours faithfully

Jo Cousins (Ms)"

Friday, 17 January 2014

BBC Womans Hour talking about going back to work after have a special needs child

As the majority of commenting happens on Facebook I have added in a Facebook comments box so that these comments will now show on this blog as well.

You can still use the old comments box but you now have the alternative option to 'like' or comment on a post and automatically share your comment in Facebook. So, can we try this out please and add any likes or comments here instead of in Facebook. Should be easy peasy and means (assuming I've done it right of course!!)

To give you something to talk about (!) BBC Womans Hour has Hannah from on next Monday to talk about her experiences going back to work after having a child with additional needs. is an online shop which has some nice stuff; clothes, toys  and things like weighted blankets (following a theme from previous posts). I'm always inspired by anybody, especially a parent of a special need child, who sets up their own business so I'll be listening in.

Saturday, 11 January 2014

SWAN kids

This little girl is undiagnosed and her grandmother has a blog that I've just come across.

Friday, 10 January 2014

Hand made weighted quilts and supportive seating on the go

I posted a while ago about a lady I had met who was begun making weighted quilts. I had lost her card so couldn't share her contact details but I have now found it again!

Weighted blankets have been found to help children with sensory input disorders, particularly children with autism. Something about the evenly distributed weight calms them down and often helps them to sleep. Anyway, Janette makes beautiful quilts and these weighted quilts are intricately made. I'm thinking about getting one for Seth. It might not be an appropriate solution for your child and the weights can make it an expensive experiment but last time I spoke to Janette she was looking into payment options so that you if it doesn't work out she'll take it back and refund you some of the cost. You'd need to contact her directly to ask exactly the details but her email address is and I know she plans to have a website soon.

Speaking of useful kit, I got very excited about a new innovation created by Leckey and Cerebra. It's part of a new Firefly range and it's called the GoTo Seat. This seat is completely portable and can be attached to supermarket trolley seats, dining chairs, swings etc etc and it provides postural support. Where has this been all my life?! I hear you cry. And that's when I stopped being all excited. Because Seth is too big for it. Size 1 is only available at the moment and is for children 1-2 years and Size 2 which will be available soon is for up to 5 yrs old. So whilst I'm gutted for me it's still a brilliant invention and will make an massive difference to parents' lives.

Friday, 3 January 2014

My new crazy project; setting up a play centre for special needs kids

I've been distracted from my blog recently. I've got it into my head that I can set up a play centre for our kids with additional needs. It's utterly ridiculous, of course. I have no start up cash, would need to fundraise an utterly enormous amount of money and then would need to make it a financially self-sustaining concern.

And yet others have managed it. So why not? Would it not be better to fail at trying something amazing than convincing yourself there is no point even trying. And maybe not failing at all! So, I've been reading about setting up a charity and trying to understand what difference being a social enterprise would be. And looking into Crowd Funding. I've even chosen a name (Giggles Play) and set up a Facebook page to get people talking about it.

I get so frustrated having nowhere to take Seth where he can simply chill out and enjoy. Especially when the weather is rubbish and so going out for a walk is out of the question. We've got really cool people in our little community with similar goals so hopefully between us we can create something that our kids deserve.

So, if you are a parent, carer, special needs professional, someone who has experience of setting up a charity, social enterprise or crowd funding; I need to hear from you! I'll take any and all advice. And if you know someone, please share the facebook page (or twitter account @giggles_play) with them.

Oh and if you know anyone in a legal firm I could really do with some pro bono legal advice!