This year is a challenge, I knew it would be, but I don’t think I really appreciated how much of a challenge it was going to be, and it hasn’t even reached its climax yet!
The first challenge has been home schooling. This has not been an easy task for either of us. For Sofia it has been the ‘doing’ of it, and for me the understanding of why the ‘doing’ is so hard for her. In the end I gave up trying to understand and trying to make it happen, and found different language (way to talking to her) just to make something happen.
The second challenge is the appeal process for Sofia’s school placement. This is a challenge because of the emotional investment and will climax in June and July when we have the hearing and the process that follows according to the outcome. There is and upside to this though that has made the home schooling challenge a little easier.
A couple of weeks ago Sofia had her assessments with speech and language, occupational therapy and educational psychologist. All three were supportive for the placement I want for Sofia. More than this though is the flagging of new diagnosis for Sofia. It is common with a diagnosis of autism, that a list of further diagnosis will follow, and for Sofia these will be – Dyspraxia (lack of coordination), Hyper mobility (loose ligaments which compromises her ability to control the movement in her joints) and Executive function disorder (the inability to ‘do’ tasks).
Why would I be happy about these new ‘conditions’ coming to light? I’m not really, no one wants to have a label that says their child can,t do something that the average person can. But, I can tell you, and I wish all the parents struggling with accepting an autism diagnosis could read this, but knowing these things makes life as a parent so much easier.
It is hard not to blame yourself as a parent if you child is not performing in the way that is expected persistently. To question the why’s and where fors. Ultimately you might accept it is something you can’t change, like I did after several months of homeschooling, but that feeling that the reason you are at that point is because there is something you have gotten wrong in the first place, and there is the sense that you have given up on your child because you no longer want to try to get them to that expected place. Failure.
The diagnoses changes this perspective completely. Now I understand Sofia’s resistance and difficultly with exercise and why she tires so quickly for example. The biggest thing for me though is the executive function disorder, which effectively means that she literally finds day-to-day functioning difficult, the simple act of actually doing things, planning to do things, prioritising, multi tasking, behaviour modification and control, self-reflection etc This is the right arm that is missing in the autistic brain and is a very common diagnosis that comes with it and it is really important because it provides the detail to autism which is otherwise a vague and difficult thing to understand.
The biggest cause of suffering in the autism world for both the child and those around supporting the child is expectations. What we expect of life and how it should be. It is such a subtle thing that holds us in place, keeps us going and motivated, but when it is misplaced, it can become a heart breaking pain from which there is no escape.
Last year Sofia and I came up with the super cool idea that it would be great if she could ride her own motorbike on a round the world trip when she is 18. It was such a great idea and she loved it. And whilst I would have been happy if this idea had resulted in Sofia learning to ride a bicycle or was able to achieve a degree of independence as an adult by being able to ride a scooter at the very least- today I realise that even these small goals may be beyond her reach. Have I given up though? No! of course not, but nor does it sit in my field of future goals for her because, whilst before I expected that Sofia would be able to over come her difficulties to get something that she wanted, I now know that even if she really wants it, it will not be enough and the path to achieving it will be a complex and challenging one that can’t be predetermined. Like walking through a deep dark tunnel with no light not knowing if you are going to find the end of it or even if it is going to take you where you think it is taking you. You just have to happy that you are there and going somewhere which is better than no where.
One expectation that is absolutely out the window, is the idea of doing another bike trip over this summer. India was pegged to follow through Sofia’s interest in Hindu culture. After 3 months of home schooling, the thought of trying to plan anything has sent my mind into melt down – I simply don’t have the capacity for it. Indeed, anything outside of the realm of home schooling and appeal causes minor melting in the brain, so I am seriously thinking about packing the bikes away for this year. I did then think that at least a month at an ashram would be good for us both to lose weight and increase our fitness – but sadly even this isn’t going to happen. I checked in with the solicitor before booking flights to make sure I wasn’t going to be needed after the hearing, however there is a risk that there is a second hearing and then there is also a process after the results which I need to be available for. There is a 2 week window immediately after the hearing only but we have a visitor in that time period so we can’t do anything then. If we do anything this summer it will be truly spontaneous!