Saturday, 23 November 2013

A lovely fun day

We've had a brilliant day today. This morning Seth had riding. He rides every Saturday morning with Wilby Riding for the Disabled. For the last few weeks Craig has taken him on his own and I've had the pleasure of doing some cleaning (weirdly it is a pleasure, too, cos it's so nice to have the time to make the house nice. Plus I can add it as excercise to my weight loss mobile app!). I'm told Seth did his usual of laughing the whole time he was on the pony. It makes me smile just to think about it.

This afternoon we went to Tunes Together. This is music therapy - there are 5 other children that attend and it's all about making music and using it as a way to communicate. There is one lady (Suzanne) that runs it with the support of what I imagine are music students and/or music therapy students who are all talented and very keen. Its 2 hours, once a month and we have it for a year. And Seth absolutely loved it this afternoon. The biggest thing about these sessions is how they are geared toward the child and responding to each child individually. Seth and I went to music therapy when he was pre-school and this is something else again. Suzanne is not content with having the parent hold the child's hand and bang the drum in time with the song. She wants the child to interact with the music themselves and any independent response is pounced on and encouraged. So, for example, at the beginning of the session we passed a drum around and the children were encouraged to bang it and say their name as part of a song. Seth nowadays might feel the drum but is unlikely to hit with any strength to make a sound. And he is very unlikely to hold and use a drumstick. Plus, he's never appreciated having his hand taken and forced to doing something like that. But he does enjoy using his feet. Suzanne noticed and put bells around his ankle and he was able to fully participate in making music, moving his feet in time to some of the music and stopping and starting when the song stopped and restarted. And boy did he giggle! And we were able to sit back and let him participate on his own terms.

Another example of how the activities are entirely responsive to each child was the first session we attended last month. The children were encouraged to play an instrument and when they hit the drum or shook the bells or pressed the pre-recorded switch the group played their instruments. When the child stopped, the group stopped. A lovely way of allowing the child to control what was happening. One of the children didn't want to play an instrument but instead wanted to bounce and slap his feet on the floor. So we were encouraged to join in with this instead and he loved it.

So you can tell I'm pretty impressed. Galaxy Hot Chocolate have a charitable fund and they are giving financial awards to a number of small, community based projects. Tunes Together is hoping to get some of this funding to buy more equipment but they need votes. So please visit Galaxy Hot Chocolate Fund page and vote for Tunes Together.

Monday, 18 November 2013

Learning to beat 'the wall'

A friend shared this link:

20 things parents of kids with special needs should hear

I especially liked the reference to running a marathon because I certainly felt that I've 'hit the wall' recently. The wall is the point in the marathon when a runner's glycogen (stored energy) within the muscles is depleted, causing sudden fatigue and loss of energy. I find the analogy helpful and it is possible for the marathon runner to beat this wall by being prepared for it: eat right and train at the right level.

Well I've been trying harder to eat right and I've joined a gym so that should help with keeping the energy levels up. I'm certainly feeling better for it. But it's not just that. Seth's birthday is coming up and that's always a difficult time for me. It should be a celebration of his birth but instead it's a reminder of a very dark time. Craig and I have been pushing forward ever since then and we need to be able to keep motivated for Seth. It certainly helps to be able to celebrate some really fantastic achievements like Seth's swimming.

Last week he swam a whole length unaided! He swims on his back kicking his legs like a frog. He came home from school with a certificate and I'm extremely proud.

Seth has also been playing with a new toy we have on loan from the Cerebra lending library. The toy is a bubble tube which changes colour. It come with a switch and a microphone so you activate the bubbles by pressing the switch or even by making a noise. You can even change how long the bubbles go on for to encourage the child to have to press the switch again. I recommend the library - it's free, you just register and choose the toys you want. It's very popular so you do have to wait. But it's worth it. They even arrange for the toy to be collected again. The only thing I would say is that the switch that comes with the toys isn't very sensitive and Seth doesn't have the strength to use it. However, I was able to get hold of an adaptor and plug his switch in instead.

Friday, 1 November 2013

6 years in

I'm full of cold. Again. And I'm so damn tired all of the time.

I spent 5 years pretending that  I could carry on, unchanged. But this year the cracks began to show. I think that moving house was the catalyst: we now live in a house that we enjoy, with the space and quiet to relax in. That has helped in that I have stopped being a drill sergeant forcing us to go out and 'do stuff' every weekend. We can simply walk round the garden and give Seth as much fresh air as he needs, and give him physiotherapy at the same time. However, I've stopped wanting to do anything: the act of going out is even more energy than I can manage.

We have babysitting options. We stopped using our Direct Payments to go out for a couple of hours once a week, and instead store it up to do something all day once a month. We were finding that we were forcing ourselves to go out of an evening when we were too tired and wanted nothing more than to curl up in front of the telly.

We've got the Babysitting service - a bank of childminders who offer their service to sit for your special needs child in the evening. Out of 30 or more childminders, only one felt they had the necessary experience to babysit for Seth. But she is fab so no worries there. To book her I simply have to email the service with the date I need. They then email her to ask if she is available and, once confirmed, we can then sort out our evening plans.

We've even had friends offer to sit with Seth if we need to get out one evening.

That all sounds really simple while I'm typing it. And yet it feels just too much effort. And maybe right now that isn't such a terrible thing. In the 5 years after Seth was born, I went back to work (albeit I dropped to part time after 6 months), I was an active member of the local residents association, I attempted to rekindle my massage business and I joined a roller derby team, volunteering with their marketing and fundraising, as well as trying to learn to skate. Should I really be surprised that I can't find the energy to do any of that now?

I thought that things would get easier as Seth got older but in a lot of ways it actually feels harder. I told a friend recently that it feels unrelenting - there is no break and even trying to get that break involves effort so isn't so much a break. I don't want to have to organise my break, I want someone to come along and just hand it to me. Last week I had an evening out with 'the disabled mums'. A group of friends I gained when attending special needs pre-school activities. We go out for a meal every couple of months and it's really my turn to organise the next one but it feels lovely and indulgent to just be told where to go and what time and all I have to do is turn up. & I know I've posted about this before but we all spend the whole evening laughing, mostly at ourselves. They are my life line and have kept my sanity for the last couple of years. If Craig had something similar I don't think he would have been signed off work with stress this past month.

Where is this rambling, morose post going? I suppose that while I know it's okay to just stop, to not try to take on everything and focus on home, I don't seem to be feeling any better by doing so. I'm just as tired, struggle to get up each morning, go to bed weary. It isn't any easier trying to organise going out as a family because it's a roll of a dice whether Seth will be happy, in which case we have a lovely time, or whether he complains, in which case it's just horrible. I think I understand him and then I realise that I've gained nothing. We've achieved a lot, but that means we just face the next challenge. Brings me back to the unrelenting comment again. Seth turns 6 next month and I suppose I thought that things would be different by now but in so many ways they've really stayed the same.

Monday, 28 October 2013

My own top tips for free portraits and weighted quilts

My last post was a link to a post from the  National Autistic Society (NAS), retweeted by Netbuddy and it was the speech that a women gave about her brother who is autistic with learning difficulties at the launch of Push for Action campaign. The campaign is to push for more support for people with autism. There is more on the campaign on the NAS website. Netbuddy is a useful website with handy tips, and its merging with Scope shortly.
Speaking of things to know about I've met a woman who makes weighted quilts and she made one for a friend of mine. Weighted blankets can be good for children who have difficulty sleeping and for those with sensory difficulties. They are all hand made and if it's something you were thinking about then I recommend you check out Weighting for Sleep. I've lost her business card but she can add her details in the comments below.
And finishing my recommendations, another friend has had free professional family photos through a new charity;

Tuesday, 22 October 2013

"I want him to achieve his fullest"

I've just read this great blog post and I'd like to share it. A woman talks about her brother who has autism and special needs

Saturday, 12 October 2013

A week of dentist trauma, possible concussion and then swimming antics

Well this has been an emotional roller coaster of a week!

Last week I had been offered a dental appointment for mid-week. However, after a terrible weekend for Seth (and us!), I phoned again on Monday and attempted to get a sooner appointment. I succeeded on getting us in on a cancellation Tuesday afternoon. Craig took Seth.

The dentist is the dental department of Isebrook Hospital in Wellingborough. They visit Seth's school once a year  and have seen Seth twice there, and I have taken him in to the hospital before and seen a lovely lady dentist. By their own admission they are experienced with receiving clients with special needs. & yet the dentist that saw Seth on Tuesday clearly has no idea what he's doing. He took one meagre look into Seth's mouth and announced that his teeth were probably all decayed and that they might well need to be removed, obviously under general anaesthetic. When Craig queried this, he then admitted that the discolouration he saw may be that Seth had just eaten his lunch and referred him to a specialist. On receiving this news from a rather shaken Craig, I initially took it pretty badly. 1) what the hell? I've been cleaning his teeth most nights for the past couple of years 2) oh my god what pain must he be in! 3) oh my god we're those kinds of parents that let our child's teeth rot and need to have them be removed before he's 6 and 4) how on earth is he going to eat and ever learn to chew while he waits for his adult teeth to come through?!!!!! Then after further discussion with Craig that night, I just got angry. There was still the fear and worry but mostly I figured the dentist must have been wrong. We had a follow up appointment booked for Thursday so we wouldn't have long to get it resolved. For Seth's part he calmed down and actually spent that evening and night sleeping peacefully.

Wednesday took on a whole new angle. At 1pm I got a call from school because Seth, who was sitting freestyle on the floor, had got annoyed because he wanted to eat the cakes they were making in class and threw himself backwards hitting his head hard on the floor. There was no school nurse around and his teacher was worried about possible concussion and so called. I liaised with Craig and he travelled into school whilst I left work to meet them in A&E. In the meantime the nurse had arrived, shared their concern and then phoned for a paramedic because Seth started fitting. Craig arrived to find the paramedic giving Seth oxygen but after some food and a ride in an ambulance Seth returned to his exuberant self and we didn't spend too long in hospital before a rather pale but otherwise healthy boy was allowed to go home.

At this point I think I should mention that Craig is home because he's signed off from work with stress!

Thursday we went back to the dental department. This time we saw the nice lady dentist that I had met previously. She had a very thorough look in Seth's mouth and said that all was healthy. It turns out that whilst one tooth is coming through, another front tooth is wobbly and that it's also likely that some more molars might be starting to come through as this all usually happens about the same time, around the age of 6. She introduced us to the team who go into the schools and left us to make 3 monthly appointments so she could keep an eye on Seth: it's possible that his small head may cause problems in the future if there is not enough room for the teeth to come through. She also explained that calpol does not help with tooth pain at all and to just use ibruprofen.

So we left mightily relieved and today I spoke to a friend who had a very similar experience to us; she also made an appointment for her son at the dental department because of their experience with special needs. The dentist she saw also spent scant time actually looking at his teeth before diagnosing decay and that they would have to be removed. After a very anguished time, they then received a contradictory report from a second dentist who told her his teeth were completely fine. I need to find out the name of the dentist we saw and doublecheck it's the same man. Then I feel a complaint coming on. I feel I should be more outraged about all this - it's likely that there is some dentist giving out the most awful, completely incorrect information, traumatising parents. Is he just an idiot? And how is he still practicing? But the truth is that we're just so relieved that Seth is okay and we've got so many other things to focus on...maybe that's how they get away with this stuff?

The week has ended on a real high though. Seth has slept well all week and is in much better spirits (and so are we!). Today, Craig swam with Seth at school. Seth swam completely unaided for the width of the pool. He lay on his back, kicking his legs and kept his head above the water and laughed his head off. Fantastic! I'm so happy Craig got to experience this but I'm also very grateful for my brother in law, Rob, who has volunteered to swim with Seth almost every Friday. Without him Seth wouldn't have swam as often has he has and wouldn't now be swimming unaided. 

Friday, 4 October 2013

Teething troubles with our new Occupational Therapist

I need to find the time to blog more frequently - I've got so much stored up to say!!!

So, we're definitely taking Seth to the dentist. I'm making an appointment later today. We had a week of calm but now that's over. It has to be his teeth - I finally found someone whose son also has pain when his adult teeth come through - so I need to get them checked out.

I had quite an unbelievable telephone conversation yesterday. We hadn't heard from Seth's OT (Occupational Therapist) for a while. She came round at the end of the summer holiday to review Seth's new seating and I had explained that it was causing us problems. It's all wood and the head rest has no padding and Seth just keeps slamming his head back onto it. Plus the tray is concave (I think that's the right word; it has a half moon cut out of it, I suppose so there is room for the child to grow?) which means that there's a big hole for all his food to fall into his lap and for any toy I try to put in front of him, to roll down. She had a look, removed  the head rest completely and said she'd get the rep to come to offer solutions. I also asked if we could upgrade from the potty chair to something that attaches to the toilet as his balance was so good and he was getting too big for the chair. She said that was an easy fix as she had a product in stock.

However, I didn't hear anything until yesterday when a new OT phoned to introduce herself. Our old OT was on secondment and her workload had been shared out. Now, I work an hour from our home town  Monday-Wednesday and then from home the rest of the week. Seth is at school every day and Thursdays goes straight to trampolining after school. So the only day we can have appointments is after school on a Friday. This is quite limiting, I realise, but our OT has been with us for a couple of years and knows this. It was always a problem because her working week didn't extend to a Friday so we made all of our appointments in the holidays. So why are we given a new OT who also doesn't work Fridays and isn't working this half term?! Plus she knew nothing about the rep needing to come and see Seth's chair or anything about the toilet seating. She actually asked if she could come next Wednesday and when I said that not only was I at work but Seth was at school she asked if I could keep him home from school that morning.

Needless to say she won't be coming next Wednesday.

Onto some nice news, now. We are back in print in Country Walking magazine! They have printed an update with a lovely photo of Seth in his new buggy. There are lots of walking opportunities in this issue and to celebrate I've started a new walking blog called Walking with Seth. I'm going to be tackling different routes to test their accessibility for both wheelchairs and 'all terrain' buggies and my first one ended in disaster.

Finally, last week I secretly video'd Seth. In this video, which is almost 3 minutes long, Seth sits with a couple of toys in front of him and some desk bells. He spends some time thinking about it and then does the most amazing thing with his hand. Keep watching,'s worth the wait :)

Saturday, 21 September 2013

Seth is an anomaly!

Last week was hard and it reminded me how fragile our family life is. We took Seth to our GP Friday; he gave Seth a thorough examination but also found nothing wrong. He was unconvinced that a new tooth could cause Seth so much distress, especially when I told him that Craig had been wiggling Seth's wobbly tooth and Seth actually stopped crying and even giggled.

And then Seth fitted. Seth has a fit every few months and they are very small and is an indication that Seth is extremely tired or under the weather. This was something different. We were actually out and Chloe, who we receive 'Direct Payments' for to take Seth out and give us a break, was looking after Seth for the day. She was texting us updates and Seth was having a better day. Then she phoned to say that during tea Seth had fitted twice. The worst lasted over 90 seconds and he had been completely absent and his breathing was extremely shallow. Naturally we came straight home and found him in bed and happily chatting to himself. Happier than I'd seen him for 4 days. (good grief - this whole experience had only lasted 4 days? It felt longer!)

When Seth was about 8 months old this was what life was like. He was unhappy and cried all the time. I remember going to a GP and being told that he had dry skin and that I should use more cream. Really helpful! Several weeks later Seth's fitting started and it was like a storm had cleared: immediately after a fit Seth was always more alert and aware of his surroundings. He even made eye contact for the first time. Our consultant warned us, however, that these fits were very harmful to Seth and that if he ever started experiencing them again then we could lose all the development that Seth has gained.

So Seth's fit last weekend after several days of crying transported me back to a fearful time. We actually have agreement that we can book Seth straight in for an EEG if we are ever concerned, however the few times Seth has fitted since having this agreement has been over a weekend when the department isn't open! So we simply had to wait and see what happens. Either Seth fitted because he was in fact poorly and that was why he was crying - even though two GP's couldn't find anything - or he was crying because a fit was building up. If it was the former then a cold, or something, would present itself and if it was the latter he would probably fit again (when it was bad they used to come in clusters).

But nothing happened. He gradually just got happier each day. His wobbly teeth fell out (I never saw it again, Seth must have swallowed it) and there is no sign of a new tooth yet. One week later and although there has been a period of time each day that he has got inexplicably,very upset, in general he has been his normal happy self. Even the bath time crying seems to have passed.

So I've started to relax again (a little!). What else can I do? We still don't know (as usual) why Seth was so unhappy. Maybe it was his tooth, maybe he was just feeling a bit crap and maybe it was because he's been doing so much lately and brain just 'spazzed out' and gave him a fit. Maybe next week this will start all over again or maybe it will be like it never happened (apart from the extra tension around my shoulders!)

Thursday, 12 September 2013

One of us Needs a Sedative.

Last weekend I noticed one of Seth's front teeth was wobbly. It was a reminder that he's growing up! I wanted to try to explain to him what was happening. So when I put him to bed Sunday night I sat and told him that his tooth was wobbly because he was growing up into a big boy and that once it had gone he would get a new, adult tooth. I felt a bit silly doing this because really, what was the point? He barely looked at me whilst I was talking and probably had no idea what I was saying. But then again, maybe he took some of it in. And if he was a 'normal' child I would have explained to him what was going on - losing his first baby tooth is a big deal.

I talk to Seth, in that I've always told him what I'm doing as I'm doing it, to help him understand his world and in the hope that repetitive, spoken routines will help him do things for himself one day. So, I talk through dressing and cleaning and feeding. But we don't talk. I can't ask him 'how was school?', for example. In fact I read somewhere that you should only ask specific questions such as 'did you enjoy such and such activity?'. Something to do with open-ended questions like that are difficult for a child with learning difficulties to get their head around. However, most of the time I don't know what Seth actually did at school that day so I can't ask be specific in my questioning. So maybe I'll talk and get an 'ugh' or a 'boo' back which is as close to a conversation I'm going to get. And actually that's pretty cool because for a very long time we got nothing back at all.

But this whole wobbly tooth thing has moved on dramatically and we are now re-living the nightmare of Seth teething. On Tuesday evening, Seth spent from 8 until almost 11 screaming the house down and nothing we gave him calmed him down. He finally cried himself to sleep. Surprisingly, he slept through the night (or at least he didn't wake us up) and was fine, albeit tired, in the morning. So he went to school. I arrived at my parents house after work on Wednesday (they pick him up from school for us) to find him in the same state. This time I called the out of hours number. By the way, can you believe that whilst giving your name and contact details they then ask you for your ethnicity. I'm completely stressed with a screaming child in the background trying to get to through to someone who might be able to help me and they waste time asking about ethnicity. I completely bit the guys' head off for that. Anyway, after some time on the phone answering questions, waiting most of an hour for a call back and then an hour or so at the out of hours clinic it was confirmed that there was nothing wrong with Seth. Except of course for the screaming. He was very flushed so we all agreed it must be his tooth.

Today has been mostly the same and if in the morning there is no change then we're going back to the doctor. I don't know about Seth but I can't take much more. Are we going to go through this for every tooth he loses? Previous experience suggests that he seems to experience pain acutely, maybe because he is so 'within himself' and also we can't distract him with toys or television.

Has anyone reading this who has had kids old enough to lose their baby teeth found it a difficult time?

Sunday, 8 September 2013

The Simple Joy of Moving Your Hand

Seth is gaining so much more control over his own body. You can see it in the way he moves his hands, how he steps more confidently and the way he can sit on the floor and twist his torso round to look around him. These are all recently acquired skills through the smallest of little 'steps' so subtle that we barely noticed them but amount to Seth actually moving himself and interacting with things around him. I can actually simply sit and watch him just moving his hands in front of him; moving his fingers, feeling the velcro on his straps or waving his hand through the air. We have started to play 'knock the bricks over'. A friend bought Seth, a couple of birthday's ago, magnetic, stackable shapes. And finally we are playing with them. I stack the bricks 3 high and Seth knocks them over. Magical: it's clumsy movements but they are deliberate and it makes him giggle. And my heart stop.

It also means that life has gotten just a little easier. When we travelled to Leeds last weekend we stopped on the way for some lunch. We were able to sit Seth on the chair and feed him a sandwich instead of his wheelchair.

We can also have carpet picnics and feed sandwiches to Seth sitting on the floor, which means we don't always need to lug supportive seating with us.

This also mean though that with Seth's new mobility we lowered his bed not a day too soon. He now sits up in bed and bum shuffles his way to the other end.

There is a slightly high side along the bottom, as well as down one side so he just pushes his feet against it but I'm certainly relieved that there isn't such a long drop any more.

Thursday, 29 August 2013

Seth starts walking

Seth got his new walker a month ago. I read about the Leckey walker last year on a different blog and it looked amazing. All the walkers I had seen before this that gave the level of support that Seth needs had loads of stuff at the front so if Seth did actually walk up to something he wouldn't be able to reach for it because the rest of the walker would be in the way. The 'spine' of the walker moves with the child so if they turn the walker turns to. It also can go outside. Anyway, I was smitten and spent the rest of the year trying to get our physio to arrange for the Leckey rep to bring one to school for Seth to try. I succeeded this Easter and we were able to trial it for several weeks. Our physio was convinced and she managed to convince the panel that decides what equipment gets funded even though it was more expensive than the usual walkers they provide.

It arrived just before the Summer holidays began and we had limited success. During the trial Seth really enjoyed the walker. Okay he mainly liked how he could bounce but he also took some lovely steps. Since then as soon as I've put him in it, even if he has walked up to it (with me supporting him) as soon as he was in it he would just go limp and just hang there. One time he even fell asleep in it! The walker supports Seth at the chest, hips and under the arms. However, it also has a little 'seat' which is intended to just provide support when needed. However, Seth was just immediately sitting on it and could not be cajoled into 'standing tall'. I managed to catch a moment when Seth forgot himself for a minute and did actually take a step!

On Saturday we did have some success with Seth being encouraged to walk between Craig and Craig's dad.

Yesterday our physio came over and we agreed that we should remove the 'seat' support. He can't fall because there are still the supports under his arms that go round his chest. As soon as we did this, Seth was off! Before I was gently pushing the walker as he took a step so that he didn't have to pull the weight of the walker as he attempted to walk. But now there is no need, he was happily moving forward on his own. He's been in it today again and with the same happy success. No recorded evidence yet - I was too delightedly watching to think to grab my camera. 

Thursday, 15 August 2013

Cutting Seth's bed down to size

So we did it. Well Craig did it. We were worried that Seth would fall out of his cabin bed so we cut it's legs off.

I was pretty worried but Craig 'nailed it' on the first attempt. It's completely even; no wobble. I am very impressed! I wanted to keep the ladder, albeit also chopped, so that Seth could still climb into bed one day.

And the sensory den that was underneath? I moved that to the other side of the room.

With the curtains closed it's still pretty dark and the lights look just as cool. I actually think Seth prefers not to be so enclosed now.

Tuesday, 6 August 2013

Seth is going to fall out of bed one of these nights

We bought Seth's bed almost 2 years ago as he was growing out of his junior bed. It was getting really difficult picking him up at 2 in the morning when he inevitably woke up so we decided to buy him a cabin bed with a den underneath. That way he was at a more comfortable height and I strung lights up in his den to turn it into a sensory area.

Problem is that he has gotten scarily mobile. He's been sitting up in bed since last summer and now we regularly find him sitting up facing the other direction now that he is learning to 'bum shuffle'. It is slightly higher on one side which has stopped him tumbling out but I'm not sure that's going to stop that for much longer. There is a set of steps at one end and a slide at the other, all making for a very cool kids bed but really not useful or practical for Seth right now.

It's a shame as it really is an ace bed but its wonderful as its because Seth is more active and able to move his body on his own. Even a higher bed isn't such a need anymore as we don't have to pick him up from prone; we can get Seth to help by sitting up first and then (as long as we hold him) he can push up to stand. Or I could even help him to swing his hips round to stand straight onto the floor.

I know trampolining has made such a difference. I can see him gaining more balance and control of his body during the lesson. The conclusion to this? We're going to cut the legs off Seth's bed. We've looked at single beds that have a higher side and they are expensive so we are just going to bring Seth's bed down to size. Bit risky as neither of us are very handy with a saw... Here's a photo of Seth's bed whilst its still in one piece!

Wednesday, 31 July 2013

Seth and I are in print!

I read Country Walking magazine. I started reading it before Seth was born. Afterwards I quickly realised we were not going to be doing much cross country walking and so stopped reading it. However since discovering 'all terrain buggies' my interest was rekindled and I've started buying it again.

Anyway, I submitted a photo of Seth and I walking in Galloway Forest during our Easter holiday in Scotland to the magazine and its been published! I also asked them about featuring accessible walks and they replied that they had been considering it. I was well chuffed so we are in the August issue if you fancy checking us out and reading my letter.

Tuesday, 23 July 2013

Working through our fears!

One week on and we may have begun to crack Seth's new phobia. Through a process of elimination we've realised that it isn't a skin reaction, either to heat, grass, existing medicine or soap. We tried putting Seth in the bath when it was empty and he became just as hysterical. We spent days just sponging him down to keep him clean. Then on Sunday night I decided that we were just going to have to work him through this new phobia. Whatever originally caused it, it now definitely was just in his head.

I started by walking him up the stairs, talking to him gently all the way. He immediately began to get very upset. This boy definitely knows that bath time lies at the top of the stairs! We got to the bathroom and started undressing. I wasn't 100% sure that building it up like that was the best thing and just getting it over quickly would be better but I was trying to reassure Seth that it was all okay. He wasn't completely hysterical when I carried him into the bath and the anticipation was definitely worse than actually being there this time. We quickly washed him and got him out quickly but the experience was definitely less harrowing than before. The following nights have continued in that vein so I think whatever was frightening Seth so much is finally fading!

On the flip side of these traumas, Craig's dad bought Seth a swing at the weekend and he loves it!

Tuesday, 16 July 2013

Seth is now terrified of the bath

Seth has become terrified of the bath. Usually he loves it: he splashes merrily away and enjoys the routine of washing, drying and getting dressed in his pyjamas, ready for bed. Then at the beginning of the year I tried to give him a shower which he hated and screamed blue murder. For a few weeks after that he started to scream when we ran the taps for his bath. So the experience obviously had a profound effect on him. But eventually he got passed it.

Then Thursday night I lifted him into the bath and as soon as he was in the water he just started to scream as if he was being boiled alive. It was horrific. I lifted him straight out and Craig came rushing in and put his arm in the water. He confirmed it was simply luke warm. Seth continued to be extremely upset and his arms came out in a mottled red rash.

Seth gets very dry skin and suffers from eczema so we use prescribed emollient cream instead of soap. It was almost empty and quite old so I threw it straight in the bin and replaced it with a new tub of different branded emollient cream.

Seth didn't have a bath on Friday night but on Saturday as we got into the bathroom he started to get upset. He was very tired so I figured he just wanted to go to bed so I quickly gave him a 'strip wash'. Sunday night Craig attempted to give Seth a bath. He rinsed the bath first and used the new cream but, again, the minute Seth was in that water he just started to scream and his arms grew red.

Tonight I didn't put any cream in the water. I tried to prepare Seth by getting him to walk up the stairs and for the first time he cringed away from the first step. I carried him up and he started his terrified screaming (goodness knows what the neighbours think we're doing to him!). I persisted in undressing Seth trying to reassure him the whole time and then just got him to stand in the bath. But that was as far as I could bear to go and I just held him as Craig quickly ran a wet flannel over him, with him screaming the whole time.

What so we do? I have no idea where this has come from. I can't think of any bad experience he's had in the bath that could cause this. Do I persist like I did before and hope he gets over this fear? Before though it was the sound of the running water and once he was in the bath he enjoyed it. & what if it is actually hurting him? Can his brain damage be causing his nerves to send the wrong messages to his brain? In which case there is no way I will put him through that, but how do we know? The rash was only on his arms and could well be a reaction to his severe stress and not the cause of it.

Saturday, 22 June 2013

All-terrain buggies

Today I received some fantastic news in the mail. Our application for funding for a Delta All-Terrain buggy has been approved. We applied to Cerebra and the paperwork said it could take up to 2 months to get a decision, yet we got a reply within a fortnight.

I'm pretty gobsmacked, and very grateful, its a lot of money we are asking for: the buggy and all the accessories come to almost £2,500. We are contributing £400 with the rest coming from the charity. But its going to make such a difference, I'm so excited. We're going to be able to go for proper walks without worrying about having to stick to flat paths. Stiles could still cause a challenge but it'll be lighter than Seth's wheelchair so we might even be able to carry him over them.

The buggy will come with changeable beach wheels so we can take Seth onto sand...something that has proven impossible with a wheelchair. And it will also come with a tow bar which allows you to attach the buggy to the back of a bike. Awesome!

We'll have a lot more freedom and Seth can relax, smell the air, feel the wind and hear...everything! There is nothing like having a child who experiences his world so acutely through his hearing to make you aware of all the different sounds there are around you.

So here is my plug for Cerebra. They are a fab charity for children with neurological conditions: they have an innovations centre where parents can ask for adaptations that don't currently exist; such as the very popular supportive snow sled, they provide seminars like the one I attended on guidance for helping improve sleep, they have a book & toy library and they publish research papers. They also have a lottery you can join.

Sunday, 2 June 2013

Rocking Wychwood Festival

We were at Wychwood Festival this weekend, in Cheltenham. We had weekend camping tickets but as Seth and I were recovering from a virus; Seth was definitely off colour and I was still tired, plus Craig was still suffering we decided camping probably not the cleverest of ideas. So we got a premier inn family room for Saturday night and we just went for the day yesterday.

Well it lived up to being a festival for families. There was a whole area given over to crafty stuff for kids, there was even a tent with people demo-ing board games and a waterstones tent with speakers from children's authors. I tried making this stick that you tied ribbons on with Seth but the tents were very busy and noisy with very excited children and it was all a bit much for Seth.

He was definitely much more interested in the music and started bouncing in his chair as we approached the stage. Needless to say Seth was over excited when we made our way back to our room and would not sleep until we gave up and turned the lights and TV off. Then at 2 he was awake again for several hours so apologies to anyone trying to sleep in the adjacent rooms!

On a different subject, I returned the toy and battery adaptor (from previous post) and got refunds (i do have to big up Kiddicare website because it wasn't their fault the toy ended up unsuitable and they were very reasonable, I think.) So I'm now going to buy a pre switch-adapted toy. Any suggestions anyone? Seth is finally showing an interest in his IPad:

Right it's just gone 9 but I'm off to bed because I'm shattered!

Thursday, 9 May 2013

Misjudged purchases

I had some money that had been sent at Christmas for Seth and I'd been waiting for something to spend it on. Having gone to Kidz in the middle exhibition, which was great by the way, I was armed with catalogues filled with goodies. After lots of thought, and a phone call to the company to discuss it I chose a switch and an adapter. I had considered getting one of the switch adapted toys but instead got the adaptor because that meant I could use the button with any battery operated toy which are cheaper plus get greater use out of it. The point of the switch is that its big, red and quite flat so Seth can press it to activate a toy.

Only it hasn't worked as successfully as I'd hoped. The Christmas money only bought the button and adaptor so I still needed the toy. One of the pre adapted toys the company sold was a car that made lots of noise, flashed its lights and then moved forward a bit. So I bought the mainstream alternative. When it all arrived I was very excited, feeling very clever. The switch connects to the adapter and I then attempted to fit the adapter into the battery compartment of the toy. The rather flimsy piece of metal snapped. After a call to the company I got a replacement but then discovered that it still wasn't going to work... The adapter works by breaking the connection of the battery to the toy so once you've turned it on you control the toy by pressing the switch.

However with his toy, turning it on isn't enough.  You press on the driver's head to actually make it work and so you'd have to do this as well as pressing the switch. Having gone through Seth's toy boxes we don't have any battery operated toys that don't need something else pressing on them to make them work! So my adapter is useless until I buy another toy that works in that very specific way.

Plus the car toy is pretty glitchy in that you have to press down on its head in quite a specific way to make it work, something Seth's non existent fine motor skills are not up to....its why we need the switch! So I now have a switch that I can't use with anything and a new toy that's pretty useless; I'm so glad I waited so carefully before spending his Christmas money.

I will be trying to return the toy or at least sell on and then I'll go down the pre-adapted route! Long term I am confident that the switch will prove to have been a good idea (!)

Sunday, 21 April 2013

Sore feet but good conversation

So yesterday I completed my sponsored walk. I ended up doing almost 19 miles, according to my pedometer so I'm pretty proud of that. I was of course in the group that got lost but it was such a beautiful day and I met some lovely people.

I discovered that Lady Tania Rotherwick, who owns Cornbury Park where the walk began, discovered the ROSY charity after her child was born with severe difficulties and she realised how difficult it was to find the nursing support at home. She has been supporting and fundraising for this little charity ever since, enabling it to grow and increase the number of nurses and services it provides.

I met another lady whose child had a difficult birth, similarly to Seth, but his was more profound causing hearing and sight loss, among many other things. In his short life the charity was a great support and on the walk she, along with family and friends, wore matching t-shirts sporting her son's photo.

Now the charity not only provides that respite nursing care but also equipment to loan out to families going on holiday, such as mobile changing tables. So I'm very pleased that I was able to support it, even though I am typing this with a packet of frozen peas strapped to my ankle! My team and I raised £650 the last time I checked so thank you to anyone who sponsored me.

The photos below are the team just before we set off and then me as we entered the grounds of Bletchley Palace, just a few short miles to go.

Wednesday, 17 April 2013

Training Update for the ROSY Sponsored Walk

Today I walked to Seth's school and then, obviously, walked home with him. The round trip was 9 and a half miles and took just over 4 hours. Now I'm feeling quite stiff! I'm not sure if it's made me more or less confident about walking 16 miles on Saturday. But this is my plea for sponsorship to make the inevitable aches and pain worthwhile! Please go to our just giving page and donate. And thank you to those who have done so already.

Sunday, 14 April 2013

Fundraising for ROSY

Next Saturday I'm doing a fundraising walk for ROSY which is a charity based in Oxfordshire providing respite nursing in the home for sick children, giving their parents a much needed break. The 30 mile walk will follow the Wychwood Way, which I've actually wanted to walk for a couple of years. I'm doing the walk with colleagues from work, Dan and Lowelle who are a wee bit fitter than me, for example, having completed the 3 peaks whilst I hadn't been to roller derby training since the summer and had to cancel my gym membership at Christmas! So I'm actually only doing half; walking until lunchtime which I am reliably informed will be just over the half way mark. So I'll still be doing about 16/17 miles.

I've been trying to train but it's a bit sporadic; last weekend I walked 7.5 miles and then last night I walked home from the pub, over 3 miles (that still counts, right?!).

So if you'd like to support our fundraising efforts, then please visit our just giving page and sponsor us.

Seth helps me train for my sponsored walk

Sunday, 10 March 2013

My son is a quandary

Over the last 9 days there have been some truly amazing moments with Seth. Last Friday I swam with Seth at school. I never get to do this anymore due to working and it was very lucky that I could. Seth hasn't swum since well before Christmas (it keeps getting cancelled due to the lack of staff to support it) and it is such an essential element of Seth's timetable....but I digress. We swam and I loved it and he loved it. The really amazing moment was when the person running the class threw balls into the pool for the children to fetch. She held out Seth's first ball close to him and then threw it to his right. He turned his head to watch the ball fly past. Then she did it again to his left and he again followed it's progress. I was so excited! Then when we made our way to them he actually stretched his arm out a little and pushed them back to the side. He wasn't doing any of that when I last swam with him and I was very proud. I discovered that he had goals for the swimming lessons and he had just met 2 of them.

Then this Friday I picked Seth up from my parents. He was sitting on their sofa with a toy phone in front of him. You press the buttons and they light up and play music. He was actually hitting the buttons and activating it and having a real giggle. This was pretty cool in itself and quite a new thing. I wanted a cuddle so I picked up the toy and moved it to one side...and Seth actually watched the toy as it moved and then stared at it next to him. So I gave it back to him and he carried on playing with it. I've never seen Seth show that level of interest in anything other than food before. I was amazed; I moved a toy and Seth actually gave a damn.

Saturday morning was horse riding and I watched the people that walk with Seth hand him a little flag to carry. Let me explain; I watched them hold it out to him and he reached his hand slightly forward, opened his hand and closed his fist round it. It happened so casually and then they moved on. While I'm left standing there watching from the side needing to wipe tears away. Seth just doesn't normally extend his arms or open his hands to grasp things. He certainly has been doing it more recently but they are usually quite clumsy moves.

Then today I was giving him a drink. Because it is difficult for him to control fluids we only hold the bottle up to his mouth for very short periods at a time so he doesn't have a constant flow of liquid to choke on. So I keep asking him 'more?' and then he has to reach out and touch the bottle to indicate he wants more. After a while I though he might have had enough so I asked 'finished?'. Now this usually ends up as guesswork and I only know if he is because I take the drink away and he doesn't kick off. But today he signed 'finished'. He put the edges of his fists together. This is such an unfamiliar gesture for him that it was very clear what he was doing. Plus to confirm it he wasn't bothered when his drink was put away.

All this in less than 2 weeks. I am blown away by everything Seth is doing. The reason he is a quandary? Because in between these flashes of brilliance he mostly communicates his wishes by throwing a crying and shouting fit and I usually have no idea what it is he wants. It drives me crazy and yet.....Friday he calmly shows me how he wants to continue playing with a toy and today he signs for the very first time he's finished with this drink.

Saturday, 2 March 2013

That's my duck

I've been reading Seth 'this is my duck' for a couple of years now; it's a touchy-feely book with a button to press at the end of each page for the duck to say 'quack, quack'.

Seth has enjoyed the book but has struggled to locate and press the button. Then I attended a speech and language coffee morning at Seth's school and they talked about using recordable buttons like the 'Big Mac' that we've got to record a repetitive element of a story or song so a non verbal child can participate.

So I recorded Craig saying 'quack quack' and offered Seth the large button when I got to that part of the story. And he got it straight away. That was a couple of weeks ago and it's now a great game. He'll press it with his hand or forearm consistently through most of the story until he laughs so much he distracts himself.

Sunday, 3 February 2013


Seth has had chickenpox all week. It seemed to hit him bad; he's been simply covered with spots and has been really miserable with it.

Monday, 21 January 2013

Days like this I turn into a crazy person

I'm standing at my kitchen window staring out at the beautiful snow, wishing I could have been out in it and conscious that I am at the furthest point in the house from Seth without actually going outside.

Some days Seth will happily sit and play with me and be full of giggles. Other days he just wants space to chill. But today was one of those other types of days when he doesn't want to do anything. He will protest as soon as you put a toy or book in front of him, if I try a cuddle he will wriggle off my lap onto his feet but then collapses and won't take his weight and stand straight. If I leave him on the floor he bangs his head on the floor and if he falls asleep he wakes up screaming.

I did insist on us going out into the garden. I wrapped Seth in 3 layers, put on his wellies, waterproof trousers and coat, hat and gloves. He enjoyed bouncing and crunching snow for a whole 5 minutes before wanting to be picked up. I considered my options before just going back indoors. He did look very cute though

Friday, 18 January 2013


Well the weather this weekend has stopped all my social plans which is very annoying and caused me to spend 2 hours driving what should have been a 20 minute journey to pick Seth up from school which really sucked. However, it is very pretty!

We are well and truly settled in; today I hung the last curtains and it's very cosy. Seth has his bedroom and his own shower room downstairs. Although my first attempts at showering ended not only in disaster but seems to have given him a phobia of the sound of running water because Seth now starts screaming when we run his bath. So I've really messed that up. I think I'll wait til the weather gets warmer before trying again. On the bright side its shown me that Seth recognises things very quickly, given the way he reacted to the shower the 2nd time I tried to put him in it!