Broken hearted

This Monday we had our annual consultants' appointment. It was going well. At the end Craig asked a question that has been on his mind for some time, especially after Sean (a little boy just a year older than Seth whom he had been a class mate of) died. He's been wanting to know how life-limiting Seth's brain damage was and what life expectancy he had.

Our doctor replied with his usual candour that apart from life-threatening epilepsy and complications derived from scoliosis and feeding problems (none of which are an issue for Seth certainly at the moment) Seth had a good 3 or 4 decades life expectancy. Craig didn't really react to this because, given his pessimistic outlook, this was initially good news. However, as I have been worrying about how Seth was going to cope after we were long gone and he was old and grey it came as quite a shock. 

Given that many of Seth's peers have a life expectancy in single figures, knowing that Seth should live into his 40s is perhaps something I should be grateful for. Well I'm not. It brought back all the feelings of grief I felt when we began coming to terms with Seth's additional needs and I've been struggling with it all week. It didn't help that last week it was confirmed that I'm well into the menopause which not only makes me feel very old (I'm only 41!!!) but banishes any vestiges of hope of getting pregnant again.

However, I'm beginning to feel more pragmatic about it; none of us know what will happen for any of us. My brother died when he was 16 from a heart condition that no-one knew he had so I realise that life can be taken at any time. The older Seth gets without his epilepsy developing into anything more serious, the less likely it will happen. & whilst he does hunch over his posture and movement is improving so that his spine may continue to develop correctly. The health risks usually associated with a child with brain damage to the extent Seth has it simply may not be applicable. He has always had such a robust immune system and rarely has anything worse than a cold. It's like when I had to reapply for Disability Living Allowance last month. A clinical description of Seth bares no resemblance to the boy I see every day.

Plus much as Seth's consultant is a very experienced and caring man I've never taken his expectations for Seth with more than a pinch of salt, deciding instead that we'll carve our own way. So I don't see why I should start now. It's more important to take each day as it comes rather than worry about what the future may bring.

And here is exhibit A, rare photos of Seth trampolining:

Talking

I've always talked to Seth; telling him what I'm doing as I'm doing it (if you're visually impaired it helps to be told what is/about to happen) or just chatting about stuff. In the last year he has become more and more vocal and is range of sounds has increased so it does sound like he's talking away even though we have no idea what he's actually saying. Seth's new teacher advised us to copy his sounds rather than just talking back to him. When I started doing it Seth went quiet and wide-eyed in surprise. But then he gets more lively and we turn take his sounds. If we're out it does sound  bit weird to be moaning or grunting at my son! But he enjoys it and obviously gets more out of it than me just talking normally to him. Apparently us copying him should encourage him to copy us and so encourage his speech. It feels like he's so on the verge of speaking. His sounds so much like words sometimes.

It's the same with his walking. Seth has begun to 'bum shuffle' which I'm very proud of. He still doesn't seem to have a destination in mind, just enjoying movement for it's own sake. & if he's sitting on my lap he'll wriggle until he can slide off to stand on the floor. It just feels like I could let him go and he'd just set off. But if I let go he'll just fall sideways or forwards; he just doesn't have that balance. But I'm seeing weight bearing on his arms, even if it's only a little it's still a hell of a lot more than before. And if he's gained balance whilst sitting then why not whilst standing?

& then there's the feeling. Driving home from school last week I noticed that Seth's right hand was out flat (not clenched like usual) and he was stroking the material on his car seat. I commented on it and he moved his hand to his leg and started stroking the denim giggling.

It made me catch my breath with the beauty of the moment. 

Back to school

Three weeks have passed since Seth started the new school year in his new class. And, of course, my fears have been proven unfounded. He has settled in well; my main worry had been that he would be isolated in his chair but the teacher has all the children regularly on the floor 'mixing it up' so it seems that he's getting lots of tactile contact with the other kids. An example of the amazing stuff they do at his school; on Friday they had 'sensory dance' which which means 'dancing' your hands over a child in time to music. Plus a bit of a massage thrown in. I think all of Seth's class have visual difficulties so everything is all about feel, sound and smell. I can see how, even though his sight is better, Seth would really benefit from that approach to learning.

The only one downer is that Seth's class haven't been able to go swimming for the last 2 weeks and until they get enough volunteers to help then they won't be able to. It's a problem for the whole school - most kids need one-to-one support to be able to swim so that's a lot of staff. Not only does Seth love it but it's brilliant physical excercise. So, if you know anyone in Northampton who might be able to help then please encourage them to contact Fairfields School. Craig is trying to negotiate time from work but I'm not sure how successful he will be, it would be amazing if he could because not only would Seth benefit but it would be wonderful for Craig too, swimming with Seth is such a joyful experience.

Today was the first horse riding session since the summer holidays. Seth sat so well, keeping his back straight and head up for a lot of the time. I was very proud! Then we went to look at a bungalow. It's looking like we might have actually sold the house! We had a surveyor around last week so hopefully things will be moving on. We're looking for bungalows to rent and the one we looked at today was actually a dorma. Lots of room on the ground floor and Seth would get his ground floor bedroom next to the bathroom. But Craig and I would be upstairs, albeit with our own en-suite bathroom! But the whole point of looking at bungalows is that we're all on the same floor or else we might as well be looking at houses. Hmm it was big though, lots of space with a nice large kitchen. We'll see.....

Holiday memories and lovely photos of Seth

Well the holiday was amazing. Seth was the best; he was unfazed by the flight there, the long car drives and the changing accomodation. We had a fabulous relaxing time which is still with me despite slipping back into normal routine. Long may that continue!!!

Seattle!!!

We flew into Seattle yesterday. Seth was amazing. The flight was over 9 hours and when we arrived at the condo after getting through customs and collecting the rental car it was 8pm which was very very early in the morning UK time. Seth had only napped on the flight and stayed awake and mostly excited once we had landed. Once arriving he fell asleep immediately and woke up just thirsty at 4 this morning and then after a drink simply went back to sleep, he didn't cry at all. I'm so proud of him, he's just taken it all in his stride.

We've got a view of the space needle one side of us and Puget Sound on the other. Pike Place Market is a couple of blocks away so we'll be going shopping for fresh fish and veg later. The flight was definitely improved by having the car seat which we borrowed from Lianne, thank you xx but the onboard facilities were rubbish. None of our entertainment centres were working so couldn't watch any movies, instead they offered us a newspaper and magazine!! luckily we both had books and entertaining Seth to keep us occupied.

Woman on the edge

Seth's headbanging is back again. It seems to coincide with his being tired and is obviously him not getting/doing something he wants. He can suddenly start doing it moments after being giggly and happy and he will continue to bang his head harder and harder until he is picked up. The other day I had put Seth to bed and he poo'd almost immediately. As I'm trying to potty train him I quickly scooped him up out of bed and put him onto the potty. Nothing was to hand so I had to lay him on the bathroom floor so I could get wipes and a nappy. As I left the room (I know, not having these essentials in the bathroom wasn't very smart!) Seth starts banging his head against the floor. It's carpeted and I'm trying not to positively reinforce the behaviour by always responding, and anyway I really needed to get a new nappy so I quickly dashed for what I needed and in the meantime he just kept banging harder and harder. By the time I reach him he's started sobbing but he won't stop banging his head. I can't pick him up because he still needs cleaning him up so I hold his head against the floor to try to stop him lifting it and, I tell you, for a child who doesn't have strong muscles to keep his head up, he certainly had plenty of strength straining against me.

I'm sobbing, too, by this point because he must be really hurting himself. I can't let go of him to clean him, and I can't pick him up so for several minutes we're stuck like this. What made it worse is that in between the sobs he began laughing. The sobs I can understand, but the laughter? In the end I manage to clean him up and scoop him into my arms where he continues to sob and laugh. I tuck him back in bed and it's all over; he falls asleep and Craig comes home to find me an exhausted wreck from an incident that lasted no more than 15 minutes. I felt like I was walking on a high wire and it was wobbling. Yet just 2 days later I'm okay again.

I have been filling every spare moment with decorating the house; we want to move to a bungalow and I decided that putting the house up for sale before we go on holiday (we are in America for 3 weeks - yeah!) was a great idea. So I have had 3-4 weeks to do all the stuff that we haven't done for the past several years. I do work best with a tight deadline but this really has been pretty ridiculous. However, the for sale sign goes up Monday and next Saturday we fly so I can hand over the house keys to an estate agent and we don't have to worry about it again. & now that the bulk of the work is behind me I feel like I've made it along that tightrope and I'm on solid ground again. Well mostly. 

the end of a school year

It's Seth's last day at school tomorrow, before the Summer break. I know I'm going to cry; I've been tearful all week just thinking about it. It's the nursery/pre-school class so he was always going to be changing class this September but Seth has had this teacher and a couple of the support staff since he started January last year and I've gotten attached.

Seth isn't going to the next 'normal' class that's the next age up. The chosen classes are 'needs led' so Seth instead is going to a mult-age class that is for mult-sensory difficulties. Its one of the boxes you can tick when filling out the many forms that we seem to have to complete, when having to define your child's difficulties. That was one of the few that I left blank but I am assured that Seth fits that category as well. We went to see this new class and meet the teacher. She is an amazing woman with tons of enthusiasm and really knows her stuff. The hope is that her multi sensory technique will encourage Seth in communicating and interacting with his world more. But I still left there and cried like I haven't done in a long while now. I'm upset that he needs to be there, upset that apparently he got upset when he visited the class last week, upset that he is going to be in a class where most of the children sit in their own supported seating and so he won't get that physical interaction with other kids. I'm upset that his current teacher is concerned with his progress which is why she recommended this class.

Yet I'd rather he be there with a teacher that has so many fantastic ideas about how to interact with her kids on the level they need. I've just got to keep it together tomorrow when I pick Seth up from school.