Sigh. I don't know why I do it to myself. I've just wasted a good hour looking at the local property pages, in full knowledge that all Mr C wants is a country garden so he can buy a sit-on lawn mower, and what I'd actually like is for someone to come in and just re-decorate all of our house (apart from the kitchen) in one go so it looks at least presentable. On top of that, I also know that we can't afford to move anyway (have you seen property prices down here lately?!), and even if we could, I don't know where we could move to exactly, because that decision would need to be driven by where the girls could go to school.
And therein lies the biggest problem. What school can the girls go to? Just recently I've been very aware of other parents doing the rounds of local secondary schools open evenings. We are extremely lucky in this area that there are several good schools and so it's not as if there is a really bad choice. However, everything is different if you have a child with Special Needs. I don't want to pull the old 'woe is me' line or make anybody else feel bad, but it is simple fact that the decision for us is so much more difficult. So difficult in fact, that I really wish someone else would come along and make that decision for me.
For our eldest it should be a relatively easy decision, as, unless we move, we only have guaranteed entry into one of two schools – one Catholic, one not.
I'm finding it hard though, to separate the decision for our eldest away from the choice we may have to make for our youngest with autism. For our youngest, there'd be so much to gain from going to the same school as her elder sister – that familiarity, understanding of routines and recognition of the buildings would be a great basis from which to start. However, at this stage, with Sasha only in Year 2, we have no idea if she is going to be able to cope with a mainstream secondary at all, even if it was to be with a 1-1 support (which is not currently in her statement anyway, and you wouldn't believe how difficult it is to get that changed – but that's a whole other story!).
Sasha has managed admirably in her mainstream infant school so far, and they have been extremely flexible and encouraging with her. The 'SATs' testing for end of Year 2 will be here before we know it though, and I haven't the faintest idea how they are really going to grasp and get down on paper how much Sasha has learnt and how she compares to the other children. We have discussed how Sasha doesn't have a learning disability, but we also agree that her PDA (Pathological Demand Avoidance) is a barrier to her learning. We're not sure we can define her as high-functioning, but she's definitely not 'low-functioning' (not actually a real phrase). We are currently waiting for a return appointment at Great Ormond Street where they will do more in-depth assessments (they had such a huge influx of referrals that there is now a 6 month waiting list) to help define her areas of strength and weakness.
Numeracy is definitely Sasha's thing (although she's not a genius, let's not get stereotypical here!), and she's had a love of numbers from an early age. Her reading has come on in leaps and bounds, and she reads with good expression (when she wants to, a very common PDA phrase). She very rarely agrees to write, although I have been pleasantly surprised that she has agreed to write her own spelling words for the past three weeks (being able to choose and even copy the words herself has probably helped there to be fair!). Everybody says that not being able to write shouldn't hold you back in this day and age, but I'm not sure how true that actually is. It's not as if she has picked up super fast typing skills to make up for the lack of writing (although she can build a much better Minecraft world than me...). So recording her work remains a big challenge.
Mainstream secondary schools are just so huge (so many pupils) that it would be difficult to see how they could give Sasha the attention she needs. The environment would also prove challenging for her – sensory issues are a common feature of autism. The alternative to mainstream, which several SEN (Special Educational Needs) parents turn to, private education, is likely to be impossible for us – quite apart from the money issue (as mentioned at the beginning of post, ahem), they do tend to expect a certain level of conforming and 'doing as told', neither of which particularly apply to Sasha.
My preference would definitely be for 'inclusion' for Sasha – for her to be able to attend the same mainstream school as her sister. However, PDA is still relatively unheard of and I don't think many SENCOs, let alone teachers, would fully understand it, and would be willing to make the necessary flexible adjustments to keep Sasha motivated. Even if they were, the huge task of educating her peers and the issue of inevitable bullying would still need to be addressed.
So my current feeling is that a Free School for high-functioning autistic children, led by the National Autistic Society (NAS), would be the best environment for Sasha to spend her years aged 11-18. Somewhat cocooned maybe, but encouraged and educated by individuals who would really understand and care about her, and enable her to develop her full potential so there could be a chance of good society integration as an adult.
Am I just dreaming? Well yes, it would seem so. Currently there is no such school in our county, and despite the NAS having opened schools like this already in other counties (for more information see here), our local county council is dead set against it and are refusing to support the idea. Apparently they are insisting that Hertfordshire already has suitable educational places for high functioning ASD children. That is despite the fact that there are not even any autism bases attached to mainstream schools, such as exist in other counties.
In this county, the choice is either mainstream, MLD/SLD special schools (moderate/severe learning disabilities, neither of which Sasha has) or BESD schools – behavioural, emotional and social difficulties. These BESD schools are predominantly filled with male pupils with challenging (violent) behaviour. NOT the kind of place I'll ever be sending my girl to.
Home educating is the final option, but for me it would definitely be a last resort. I totally accept the views of parents who choose to home educate, but I think lots of parents sympathise with me when I say I think my children work better for others. I know for sure that there are lots of SEN children being home educated simply because their mainstream setting was a complete disaster, and there was then no other option. Funny how the council does not have to record this fact – and also interesting to know that once out of the education system, the council no longer has to pay financially for any of these children (someone please do correct me if I'm wrong....). Why can't we have an NAS Free School in Herts? Does it all come down to money again? The fact is though, that the council would save money if the Free School was opened, as there would be less parents going to tribunal (a costly legal process) to win a place for their child at an educational setting outside of this county than there currently are.
I cannot begin to tell you how infuriated I am with the short-sighted attitude of our county council. Whether the Free School would prove to be the right choice for my girl or not remains to be seen, but I do believe that all autistic children should have the right to an education where there is a level playing field and they are able to learn without the distractions a huge school brings with it. Even acknowledgment that we need some autism bases, and widespread training of teaching staff would be a small move in the right direction.
Can you help me? How do we change this situation? What should I do next? What would you do?