Everything's on the up and up

which kind of worries me. I don't want to relax too much because from past experience just when you think things are going to be okay Seth starts fitting. But at the same time I don't want to be looking for trouble! Apart from one small 'blip' Seth hasn't fitted for a couple of months - in fact I've now stopped counting the weeks. & he's sitting. Properly sitting on the floor by himself with a much straighter back. He can sit and move a ball with his fingers and tonight he did it and started giggling. Fantastic!
It's a good job too because I don't want to have to rely on a floor sitter - it's exactly what it sounds like and this week the company sales rep came to demo one with our physio. The appointment was made a couple of months ago but when she turned up she announced that she didn't carry that item in her demo stock. What a waste of time! These companies do whatever they like - they set ridiculous lead times for new equipment and repairs and then charge the earth. & some of the build quality is really shabby. But there seems to be little competition, they're dealing with busy community workers and they get away with it. I don't think we're going to need the floor sitter anyway, but I have no idea when Seth will get his new wheelchair whilst the brakes of his current one keep seizing up. Maybe it's time to start naming and shaming these companies....

We were given a development diary some time ago by one of my many 'professionals'. It hasn't any ages associated with it and simply allows you to tick when Seth shows new physical, social, cognitive etc abilities. It's very large and detailed. As Seth always seems to be doing something new every couple of months I get all hopeful and open this diary with pen ready to tick off new boxes. & yet I'm lucky if I can find one thing that he's done. I think I've finally realised that this diary is for development which is delayed but should still follow the right route. Seth is developing but it's never going to be 'normal' so I think it's time to stop trying to tick boxes.

Finding support

I started this blog because I didn't know of any online groups to share my experiences with. But then looking for ways to get my blog 'out there' has led to finding some groups. So I have gained another benefit from doing this. I've mentioned Nutmums before but I've now discovered their discussion forum which is great. In addition, there is a Facebook group called 'Bristol is able' which has expanded from Bristol only members such is the nationwide need for online support/discussion groups. Certainly being able to connect with people in a similar position to me is great relief!

I have finished my project and it has been duly stuck on the wall around Seth' bed. He seems to like having them there which is a good start! Today Seth was amazing in swimming class; he held onto the rail and even slid his hands along it. Plus he vocalised in response to the teacher saying hello. In addition to all, this I finally made it to the toy library so I've got some new toys for the next month for the princely price of less than a quid.

This morning I woke up with a memory of Seth when he was a baby. I used to lie him on the sofa (there wasn't any risk that he would roll off) and dangle toys over him. I could never let him simply lie there, I always needed to try to stimulate him. But he never responded to them, never reached out to them and at the time I didn't understand why.

I'm not at all crafty so it's been a challenge but I wanted to create something that would help Seth understand his week. One idea I read about was to photo his activities and show them the correct one for each day. But we don't know how his sight works and if he would 'see' the pictures. I've done it anyway. and I've stuck them to card with the letter for each day of the week stenciled on it. I've then made each letter a different texture and colour. I'm going to stick them on his wall by his bed, in reach. and each morning I can show him the photo and let him feel the letter, for that day.

My mum bought Seth a present this week. It was a plaque to hang in his room. It says "the greatest pleasure in life is doing what people say you cannot do". Its a great plaque. I've been carefully stencilling out letters and sticking different fabric to card and I have such ambition for these bits of card but I don't actually believe he'll ever look at the photos or reach out to feel those letters. I'm still doing it though.

Simply magical

Last night when I put Seth to bed he looked right at me, stretched out his arm and raised his hand. Every night I wave 'night night' and very, very occasionally he waves back and when he does it is simply magical.

Things I've discovered

This is an unconnected collection of things I've discovered (at least that I can remember right now):

Netmums website has a Special Needs area in their Advice & Support section. It has a directory of national organisations plus you can search within your town/postcode.

A really great book I bought is 'Small Steps Forward - Using games and activities to help pre-school child with special needs' by Sarah Newman. It goes through the various stages of development and, as the title suggests, gives games and activities for each. I've found it great to dip in and out of.

If you haven't had Speech & Language therapy for 6 months you are entitle to apply for a £500 voucher from the charity Cerebra. We applied because I hadn't found the community offering at all helpful. The voucher comes with a list of therapists in your area and I can't recommend Louise Bridgens enough. Although the voucher has been used up we have learnt communication tools that we can continue to use and Seth really enjoyed the sessions.

I was looking for recipes that would help to alleviate stress, insomnia and reduced energy levels and came across Good Mood Food which lists foods that are good for different conditions, and Food and Mental Health which has tasty looking recipes.

Dealing with the experts

We have no idea what to expect from the future. At every consultant appointment we have dire predictions; Seth will be physically and mentally disabled..... he might never walk.... he might never talk.... he will reach a point when his brain is unable to develop any further...we were even shown his brain scan to drum home the terrible extent of the damage. At the latest hospital assessment strangers spent less than an hour with Seth and then we were handed a report which told us at what level his cognitive, speech & language and physical development was at. According to them nothing much has improved since his previous assessment when he was just a year old (and at that point he was months and months behind), and it's possible that he will soon 'plateau'.

But here's what I know. He can walk a few steps(if supported) and his unsupported sitting is improving. He can totally understand what I'm saying to him and is trying to speak and sign. He does new things every day. He struggles with everything but he achieves so much. Whether the experts are right or wrong makes no real difference. Seth will do whatever he can and we can only do everything we can to support and encourage his continuing development.