I had expected before the birth of A that my first child would grow and one day go to school, I expected that school to be much like the school I attended growing up. There have been quite a few turning points in the last three and a half years in which a large change in mindset needed to begin, but my main focus has been about what is best for A and how we can meet her needs. To enable this to happen, we’ve very much accepted the advice of the professionals, now facing schooling that’s never been more challenging to accommodate.
Since beginning the process of simply discussing schools between us, her paediatrician and various nurseries it became clear that deciding what type of setting was the first priority. At which point A had already attended a nursery with a typical placement, minimal allocated support and it became apparent to me by the end of that time that while we could force the route of mainstream educational it might not be the best option for A. Whether or not others those that will offer placements and ultimately decide will agree with me that remains to be answered, but in light of this I’ve spent the last few months visiting specialist schools in the area and soon realised how different they all are.
Always looking around the schools I would be pleased to see an environment which is was tailored at educating children with additional needs but later the realisation would hit that with an bang – this is where we are. The responsibility as a parent trying to find somewhere that can offer the care and education we’ve strive for at home for A is overwhelming. It certainty feels more so than ever impossible to ignore the challenges coming ahead.
Since she was born we’ve been told lets wait and see, I still remember sitting in a room with one paediatrician who said “I see these kids all the time, she has a bigger head that average that’s all. Don’t worry about it, that’s all it will come to you’ll see”. We later moved and that same paediatrician called me out of the blue when he had been included on a letter for A, someone had clearly just forgot to update the address list. He asked how she had developed did she have any delays? When I told him he replied “Oh”. That’s all, I don’t cite this story to shame him but to show why I feel your instincts as a parent are so important, even when in the face of experience. Perhaps I’m too pessimistic but if I had allowed myself to believe that, imagine the crash of the realisation that would have been just delayed for later.
It would be far easier if I could ask her what she wants of course, or take a peek at the future to work out where might best suit her. I’m told however that nothing is set in stone and should things change so can her setting. Ultimately I come back to the truth that probably the very best most tailored individual education for A could be given at home, socialisation is always cited as one main drawback and while I imagine this could be remedied with groups it’s really a non issue when you aren’t interested in children anyway. In her most happy, low stress environment where she could focus on any part of learning that she enjoys – in fact if anything children seem to cause more stress. Home schooling is my backup plan to alleviate the pressure of finding a suitable setting by September, but a huge commitment on my part and her brother.
I know going forward what she needs, I just don’t know how that is realised with in an environment like school. At present have a great environment for A, she’s well supported and happy in her nursery school, has access to every therapy when required. But soon it will all be stripped back and assessed, allocated. A will get x amount of this and x amount of that, parents have to argue for the therapy and support. When once it was just open access based on need a great shift occurs.
We are sitting on the very edge of this prepared to see what comes back as A’s plan going forward. It’s a complex process which I am thankful that we have so much support in navigating whereas many parents don’t at all. It’s certainly not a fair even playing field and it really should be. We should hear soon about the type of placement that the local authority (LA) deems correct for A, they’ve come to this decision by requesting up to date documentation and reports from every therapist. Once we know what type of setting then those settings can be approached by the LA to see who has places available ready for September. Then we wait to hear back and cross our fingers that the one school I visited that I felt would suit her is firstly in the right category and secondly has places to offer.
In many ways a structure educational environment has been a wonderful breakthrough for A, structure is predictable which reduces anxiety and as well as this there is structured learning. When portage first became involved A would sit surrounded by toys and not play with them, with us showing her how to play still it took many attempts hand over hand. We had a very easy and hard parenting journey, easy because we had a child that never tested any boundaries – you could leave her in one place and she would still be there happily. The thought of moving or investigating just wasn’t there. In many ways to date it still is not, in my view we have several years of hand over hand parenting. Modelling behaviour and ways to interact with various different objects, learned through others, television or us. Some of those less desirable then the others but all very controlled. In this regard A is perfectly suited to the right tailored educational environment. On the other side it takes tremendous effort to constantly model play, behaviour, speech, keep to the sensory demands and as well the physical demands of helping someone getting around.
Day to day life is very rigid and it can be quite difficult to remember to turn off the music when certain TV shows hit certain parts, to turn off the music in the car before it changes to a song A will not tolerate. While these demands seem completely reasonable to A how do we accommodate the very rigid routine in a group setting?
But to gain access to the curriculum she needs someone to model, repetitively and help her overcome the other barriers of anxiety, mobility, understanding and social skills. With this said I’m also reluctant to believe that having a shadow for your life is in all a good thing, but learning where to step back at the right times is in my view key.
I don’t doubt this struggle of trying to find the appropriate educational setting is seen across the board for all children. Many of my friends who have just decided on school options have not done so lightly, much thought has been placed and many schools visited to determine which best fits their child and their own family circumstances. I’m sure it’s a testing time for everyone!