Saturday, 25 June 2011


Seth has been a right git today. He's obviously feeling poorly so spent most of the time in bed and then when we did get him up he just kicked off. I managed to get some dinner inside him but even then he complained. So I finally got him out of his chair and we had a cuddle which was lovely until he got wriggly again. So I tried him on the beanbag that I have just bought him (he has one at school and loves it). He sat rocking on it happily for a while and then gradually wriggled himself onto the floor. He stayed there for a while chuckling and kicking toys and then rolled over onto his side and stayed like that giggling. I was pretty gobsmacked, but then he lifted his head moved his arm and rolled onto his tummy. Just like that. No fuss, just left to his own devices he does something he's had physio on for the last 2 years! But not content with that he then completed the roll to be back on his back. All this after a day of being really fed up and grumpy! Well he wouldn't be my son if he was consistent, I suppose.

On Thursday I went on an AAC Network Day. I wasn't entirely sure what it was about or whether it would be worth the effort but it was one of the most useful thing I've attended. For those that don't know (and I didn't) AAC is Alternative and Augmented Communication and after listening to presentations from professionals and a parent I realised that there is so much I could be doing to help Seth communicate. Yes, he's making more word sounds and yes he's starting to sign but he's obviously really frustrated and I certainly am. I had started using these buttons (you record a word so it 'speaks' for you when pressed) but Community took them back when he started at school and I lost all impetus with it. The parent who presented has a 17 yr old who uses eye gaze technology, but explained that they didn't start there and it's a long journey which evolves with the child. She used the example of a child wanting to go swimming. Now, your child might be able to communicate 'yes' to a list of options you offer, but you might not have thought to offer swimming. Therefore, they can't tell you they want to go. Or they might be able to just tell you they want swimming but it might not be something you want to do so you don't do it. However, if the child could tell you that she wants to go swimming because her legs ached, you would make the effort to arrange it and that's true communication.

Apparently there is a loan library of AAC equipment at Greenfields School and Wren Spinney School and I also know of a national charity loaning switch adapted toys which you pay an annual subscription for; I looked into it ages ago but never did anything about it. I think I will now! In addition, there is a new group just started in Northamptonshire called Yakety Yak ( 'aiding communication in Northamptonshire'. It has a forum so you can ask questions and parents who've been through it can help and advise.

Monday, 20 June 2011

Fathers Day

I was utterly crap on Fathers Day. I ended up getting up at 5am to do an unplanned car boot sale and completely forgot to leave Craig the card 'Seth' had bought for him. I actually had to be reminded that it was Fathers Day and when I went to give Craig his card I discovered that I'd matched it up with the wrong sized envelope so it didn't even fit! I know I left Craig feeling utterly unappreciated so I am linking to another blog I discovered on Hopeful Parents called 'Dads are Awesome' where a mum properly talks about how fantastic her husband is. Craig, I'm sorry I'm so crap and I love you.

Friday, 17 June 2011

We had a meeting with Seth's consultant on Tuesday. To prepare I started to think about all the new things that Seth is doing and there is so much! They are all really little things but they are all stepping stones to speech and mobility. Seth talks so much and its sounding closer to words. Twice now he has said 'more' which traditionally has been used when feeding but he was actually asking for a drink. He has signed 'more' and 'cake' on a number of occasions too (you can tell he's my son, it's all about filling his tummy). The other morning we were having a cuddle (he properly cuddles in now; wrapping his arms round your neck and bringing his knees round) and he was showing no signs of wanting to stop. So I asked him 'do you want breakfast?' and he pushed himself away using his hands, looked me right in the eyes and laughed. Amazing!

The consultant noted all this down and gave his traditional spiel about fits and how dangerous they are and how good it is that Seth is still only having them so sporadically. I suppose it's no wonder that I have such a negative knee jerk reaction when Seth does have them. But really all that matters is that our house is filled with laughter and happiness, something that I couldn't even imagine not so long ago.

Craig and I had a weekend to ourselves last weekend, going to Download festival. It was so good to spend the time together; we completely chilled out although we did get rather wet on Sunday. In fact rather wet is an understatement - I wasn't too bad but Craig was completely soaked through and I can't believe he escaped without getting ill! Good though cos that would rather have spoiled the moment!

Sunday, 5 June 2011

Traumatic documentaries but lovely playgroups

I've been absent for a bit because I had an assignment to hand in at the end of May so spent all spare moments intensely working on that and then, once it was finished, needed a break from the old laptop!!!

My normally suppressed fears for Seth rose to the surface on Monday with the broadcast of the Panorama programme 'Undercover care - abuse exposed'. For anyone who doesn't know what I'm talking about you can view it here. I actually haven't been able to bring myself to watch it all - I saw the beginning on iplayer and turned it off. In fact I don't even want to talk about it anymore. So instead I'm going to talk about the Stay and Play I went to on Wednesday, with Seth.

For those of you who are local it was held at Wallace Road Nursery and the woman who organised it, Cindy, works there and when it's closed during the holidays she organises these events for parents, kids with additional needs and their siblings. I heard about it from a friend and ended up going on my own so was a bit nervous but they were all lovely. Seth had a fab time and was so happy all day. The kids were all quite a bit older than Seth and Cindy is hoping to set up a regular under 5's group. The details of the 1st one is on Facebook. Seth will be at school but I'm planning to go anyway cos it will still be good to see people and have a chat.