By Rosie and Jo’s mum
I remember the first question I asked on a forum for parents of children with autism. It was “How do you find a way to switch off from the stress and worry?” We were in the early days of our journey, very soon after Rosie’s ASD diagnosis, school were being unhelpful to say the least and I was starting to realise the impact that the stress was having on me. Nobody really had an answer for me then and 8 years later, I still haven’t found one.
Parents I know of children with additional needs have lots of different sources of stress. They can include sleep deprivation, managing behaviour, seeing your child feeling anxious or in pain, friendship issues, worries about the future, health concerns, financial difficulties from being unable to work, being fair to siblings,…… but the biggest one for many people I know is the battle for adequate educational provision.
At first I trusted the school to do the right thing and put the right support in place. When I fully realised that they had no intention of doing this, I turned to the local authority and expected them to step in and do the right thing. They tried to help to a point but, as that became more difficult, they too began to present us with a brick wall. I need to be fair about this; over the years, there have been some wonderful, dedicated professionals who have done a fantastic job but there were very many who didn’t.
We are all deeply invested in our children, their well-being and their future and, for me, that meant that, every time a professional let my child down, it felt like a physical blow. In the early days, those people kept up a mask of professionalism while giving me false information or withdrawing support that my child desperately needed. They would blame lack of funding or a requirement to treat all children the same. Sometimes it would be that other children needed the support more but, as I became more familiar with the SEN code of practice and therefore more able to challenge the lies, the unpleasant behaviour began to escalate. I have had teachers shout in my face, put their hand over my face to stop me speaking, accuse me of causing harm to my own child, phone me daily to tell me I am making inappropriate decisions, ask me in for a one to one chat that turns out to be an ambush with a room full of professionals and write blatant lies about me and my children. I have never behaved in similar ways toward them or given anyone good reason to believe those actions were either necessary or justified. These things happened to me because I was politely and consistently challenging their decisions.
Although I maintained a professional front, I reeled inside with every blow. Every time one of my children came home and said that her support had been withdrawn yet again, every time a teacher flatly denied something she had said clearly in a previous conversation, every time someone deliberately used my child’s inability to communicate to deny her needs, the overwhelming emotions would start.
At first, I would just feel sick, angry and impotent. As the years progressed and the impact of the stress accumulated, I would shake and vomit. I would welcome the chance to cut up onions or have a shower because that meant I could cry without anyone realising. For several horrible months, every encounter with an educational professional, including the nice ones, immediately brought on a horrifically painful headache. I would have to curtail conversations just to stop the pain. My GP eventually prescribed medication to reduce the physical symptoms of stress.
One day, a close friend who was going through similar experiences pointed out to me that, awful though the impact was on us, we could make a pretty good estimate of how long the effect would last and that really helped.
I realised that the headache stopped within five minutes or so of the conversation that triggered it ending.
The shaking and pounding heart lasted for hours, not days.
The anger could be diminished by hard physical labour or dog walking.
The sinking feeling and the huge weight in my chest would feel less by the second day and be gone by the third or fourth.
Talking the news/conversation through with my friend, working out the reasons behind the awful behaviour, identifying strategies to move forward and realising that the worst-case scenario was manageable have really helped too. We now also support each other, when required, with reminders that these unbearable emotions will probably feel much more manageable in 48 hours.
Remembering that there is a time limit has got me through an appeal to the SEND tribunal. The usual delaying tactics, lies, refusals to acknowledge evidence and other mind games had a much smaller impact on me. I could let the emotions ride, knowing they would subside and then I could pick myself up again and carry on.
There are some longer-term effects that I may be stuck with. I have a much stronger response to stress now. The pounding heart comes much more easily and I find myself in fight or flight mode at inappropriate times. Apparently, this is common for parents of children with additional needs, a fact which says a great deal more about the professionals they encounter than is does about the parents.
As well as helping myself, I’ve learned to ask for support from others. Without the medication and the friend I’ve talked about here, I would have been in a much darker place now. We all need to remember that looking after ourselves is important so we can give the best support to our children.
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