When Max was first referred to Speech therapy, as it was then, the focus was on getting him to talk. To use language. I was told to not give him anything unless he made an effort to ask for it. I was young and didn’t know much about autism but even then that struck me as cruel and not very helpful. I’d model language for him but also learned some makaton as a few kids at a support group we attended used it. School introduced pecs but no one quite knew how to use it.
Now he uses a combination of methods, and I accept everything even a gesture or pointing. He has access to pecs, a few words, we use choice hands and anything else he decides to use- he is trying in his way and it’s up to me to learn from him. Surely it’s better to be able to understand him rather than causing distress trying to force him into something he can’t do.
When Oliver got referred to Salt I was sceptical but it has changed. We have a really good therapist. She showed me the correct way to use the PECs and she also uses makaton. The focus wasn’t on getting him to speak. The focus was getting us on the same page. Understanding that before anything he needed to see the point in communicating with me. If he led me by the hand I was to follow, if he pointed I was to respond. Keeping language to 1 or 2 words so as not to overload him but modelling language along with the sign.
He did realise there was a point so she introduced Pecs using a food item as that was his motivator. He realised quickly that the picture exchange got him what he wanted quicker than dragging me around. He learned a few words and some signs- chocolate, biscuit, blue crisps. Alongside this we took party in a play therapy study where Olly did the leading and I waited to be invited into his world. I was not allowed to push my agenda, ask any questions but was allowed to model language. After 3 sessions he realised that I was going nowhere, that I was happy to sit with him and watch what he did, helping find the bricks or whatever he wanted and not take over. Then he started to direct me, often silently, but he knew it didn’t matter whether he spoke or not. Mummy was playing and not asking him to do anything. The play was quite repetitive but eventually new things came in, new words came in, new interests new signs and a new relationship blossomed. I hadn’t realised just how much pressure he felt under everywhere. Once he could relax and expectations were removed he got more confident using his words. If he said no, I’d listen and respect it. He was in charge in these sessions. He was much more amenable to the speech therapy sessions I ran. He knew there was give and take, that he would get his chance to be in charge but sometimes he had to do the work that mummy said.
It’s taken me 2 years to get school to understand this. Reduce language, don’t ask too many questions, give him time to think, just because he doesn’t talk much doesn’t mean he has no ideas or can only follow a leader. At our last speech therapy session I was given a list of questions- it’s how to progress with asking him things, simple questions to more complex-in time. We also got a statement card which I’ve copied and laminated. Instead of single words they are 2 or 3 still with a picture with things like “I’ve had enough” “I don’t like it” “I don’t understand” “I’m frustrated” etc We keep this handy and we point to it when we recognise an emotion point to it and use the words. Hopefully he will either use it or learn the sentence to use. Although saying that he says “go now” when he’s had enough in assembly so he is finding his way around language.
I’ve told school that all communication forms are acceptable and should be treated as valid as speech. I don’t think we’ve won the battle yet but we will. I’m not saying he should get his own way all the time, but you can validate his feelings, explain things and tell him or show him a timetable of things that need to be done. Our senco is working hard to try to get staff to follow the rules, ensuring he has “brain breaks”, he has blu tac as a fiddle toy, and all the other things that I’ve shown her do work. So far this term he has spent 95% of his time in his classroom compared to 20% last year.
I think our ST has made me look at it a completely different way. Is it my job to make him talk or is it my job to help him communicate? By letting him choose his communication method and responding to it all equally I think he feels more confident that he can be understood, and is valued. I’m not perfect, I’m still learning every day but I am listening to my sons- they have lots to say- I just wish I’d known all this when Max was little. I need to help Max find his confidence, hopefully then he will realise what Oliver seems to have- mum doesn’t care if you can’t do something, she will help you in any way you want, it’s about what you need Max, not what anyone else thinks. Mum goes nowhere, she might not always get it right, but she’ll listen to all the clues you give and you can try to figure it out- together.
The talking tom app has really helped Oliver as it copies his noises. He also likes filming us playing or him practicing things with his tablet. We have a ten minute video of him jumping on the bed counting to 100. The talking tom is really annoying but whatever it takes to get him confident is all that matters.