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.

Communication

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; www.stepscharity.org. 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 (www.yaketyyak.org.uk) 'aiding communication in Northamptonshire'. It has a forum so you can ask questions and parents who've been through it can help and advise.

Saying hello

Seth's 'hellos' are definitely coming on. He acknowledges me more when I pick him up from nursery (he goes twice a week) and they tell me they walk around the room with him saying 'hello' to the other children. I can already see a difference in his awareness, as well as his walking.
During the night when I changed his nappy he actually stopped crying when I came into the room and then talked to me the whole time. It was fab, actually made me not mind to be woken at 3.30! His vocabulary relies heavily on vowels and a few back of the throat consonants but he's been making sounds beginning with 'm' for some time now and it really felt like he was saying 'mummy'. He's actually looking at me when he's making the sound for a start. It's quite amazing how versatile a sound beginning with 'm' can be - he's been saying 'more' when I'm feeding him for a year now and I'm certain that in the evening he's asking for milk. There's another sound that always goes along with it, plus sometimes he even signs 'milk' as well or brings his hands together as if holding a bottle. You don't realise how much he is communicating until you stand back and reflect on it!

Took Seth to Rugrats & Halfpints again on Thursday. Seth actually lifted up his right hand and gazed at it. I've never seen him do that whilst sitting up before. He actually did it 3 times; he'd look away and bring his hand down and then bring it back up and look again. Then I took him to his favourite spot; an alcove which is all black with mirrors and tiny lights dotted all over the walls. He just giggled and giggled. We actually had 2 other kids come over to see what all the fun was and he enjoyed sharing the space too. Unsurprisingly I have now booked his birthday party there!

Seth has been on his new medication for a few days now and it does seem to be having a positive effect which is fantastic. He still has tummy aches but he's seems happier in himself plus I think he's teething (just 2 more teeth to go!!!)which could be confusing the issue. One slight worry - he had a fit last night. The first one in almost 6 months. It was late evening, Seth had been asleep in bed and woken up crying (not unusual!). Before I reached him he had stopped crying and when I looked in he'd kicked off his covers, his whole body was shaking very slightly and he was staring fixedly off to one side. I automatically started timing it and spoke to him gently. After 2 minutes it stopped and then he started crying again. Today he was very flushed so I assume the whole thing was bought on by the teething, or simply being poorly.

I went to the crafty shop last week and I bought my sticky velcro etc and now I can clip Seth's 'hello' button to him. He's been using it all week which is great. He doesn't really react when I put his hand on it, but if it goes off by accident when he's sitting down he finds it very funny. Mostly because it's his daddy's voice that's recorded, I think.

I've also got his sensory room going! It's just his bedroom with the curtains drawn but with the various lights against the dark, purple walls it's very effective.

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.