Important Things

Yesterday, all of us went to Leicester to attend the SMIRA (Selective Mutism Information and Research Association) Parents' meeting, which is held annually. It was the first time we had attended, although we had booked to go last year and couldn't go because I was unwell.

I'm not good at estimating numbers, but there were probably around 50-60 adults and 30 kids, some with SM and some were siblings. The first thing that struck me, to the extent of bringing me to the verge of tears when I first saw all the kids together, was seeing so many of them with "the look", which once you've seen it in your own child is burned on your heart forever. It's a kind of timidity/shyness/anxiety look and it was just astonishing to me to see all these others with it when I have seen it so often on Jade. And really sad, considering that some of these kids were in their mid to late-teens, absolutely beautiful, gorgeous people who should have been so proud of who they were but instead were crippled with the anxiety of being with other people. (And as I type that, I'm reminding me of me, as I also know that objectively I have nothing to be afraid of but am often way too anxious around other people). What was also really interesting, though was finding out later that some of the kids were SM kids but they didn't look like that.

The other thing that struck me before long was I assumed that many of the selectively mute children would not be able to stay in the kids' activities room without their parents, like Jade couldn't, but in fact I think Bill and I were the only parents who had to stay with our child. We took it in turns to be in the sessions or staying with Jade (and Shannon, except she didn't need us there). Most of them, of course, will be used to being at school without their parents.

I think the reason for this became clear later in the day. There was some discussion in the afternoon session about how some children with selective mutism also have social anxiety, and some don't. Many SM kids can perform dancing or music on stage, or be perfectly relaxed in the classroom or elsewhere, as long as there is no pressure on them to speak. Jade, however, seems to have a hefty dose of social anxiety as well as SM, and will not join in games or activities in groups because of the fear of failure and embarrassment, will not join in games at Brownies except 'tag' for fear she might be 'out', will not do anything when other people are watching her. And that was the mistake we made when we first flexi-schooled her in Year 1, when she went 3 afternoons per week for dance, games, PE, music etc. We thought she'd have fun with these activities, but they were precisely the activities that she had trouble with, and of course by the end of the year she was hating it and refused to go any more. It's odd how sometimes things suddenly become clear - we are dealing with two separate but closely-related diagnoses. I knew she had social anxiety, but somehow I was thinking of it as part of the SM, whereas it is not exactly.

The formal morning sessions were dealing with SM in bilingual children, who have a higher incidence of the problem. I missed a lot of this bit because I was in the childrens' area with the girls. The first thing Jade noticed were two horses head masks being played with by some of the children, and then she couldn't concentrate on anything else at all until she'd got hold of one of them. Meanwhile we noticed another girl who had a sweatshirt with a pony on it, and I told her that Jade was made about ponies too. She told me she had a pony of her own, whose name was Moose, and from then on Jade was her devoted shadow! What was amazing was that I got chatting with a woman at lunchtime who recognised my nametag because we had e-mailed each other a bit a year or so ago, because she home-educates her SM daughter, who is pony mad, and this was the girl! I told her that her daughter had spoken to me, and she said yes, she did speak in pony-related activities only, and obviously I had just got her on the right subject! And it turns out that she doesn't have much social anxiety either - she can dance on stage, and go to pony camps on her own, and is happy to go to HE activities and groups.

The afternoon sessions contained more general discussions, which raised some useful points for us to take note of, though mainly reinforcing the principles of 'no pressure' to speak or do a particular thing in most circumstances, and 'baby-step exposure' during planned therapy sessions to try and improve the situation.

The other important thing to report is that we have decided on school. If you go here to read about the preamble it will save me a lot of time repeating myself.

Because Jade became very keen on going to the school here in Moreton, due to knowing several girls from Brownies, in January I went for a second visit on my own and discussed with them what measures they might be able to put in place for Jade if she went there. They were incredibly positive and helpful, being willing to do almost anything that would help her to settle in and be happy there. The Headteacher suggested that, because Jade's best friend who lives next door is on one of the joint Year 3&4 classes, it might be a good idea for Jade to go into that class after Easter (in Year 3) so she has a term while L is still there (in Year 4), to help her settle in. He also suggested that she could start part-time, and that a parent could go and stay with her if needed. After mulling it over for quite a while, the whole scenario sat much easier with me than I would have expected, and so that is what we are going to do. We have not yet defined what 'part-time' means, and we still have to work out the finer details, but Jade will be starting there after Easter and Shannon will start in September. I am much encouraged that she has made really good progress with the speech therapist in the past few weeks and last Tuesday did absolutely brilliantly and actually answered the ST's questions directly, albeit only one-word answers in a somewhat mumbled fashion. I was thrilled! And we have talked an awful lot with her about how all sorts of things are difficult and scary when you first do them, but you take baby steps and keep practising and get better and better at doing them. We've also talked a lot about how some things might seem scary, but when you achieve them you feel absolutely on top of the world afterwards, and so proud of yourself. So we are more hopeful than we have been for a long time that we might actually be able to make a big improvement in her situation, even if she is always a bit prone to anxiety just as I have been all my life.

I will reiterate that I do only see this as a medium-term temporary measure. I see it as specifically to help her get over her social anxiety and selective mutism, and to hell with what happens academically. I will be pleased if she stays for a year, maybe two, feels successful and happy socially, and then decides to be home-educated again. I am certain that I do not want either of them to go to secondary school.