Category: SEN life

  • The absolute exhaustion of constant meetings – just another part of SEN parent life

    The absolute exhaustion of constant meetings – just another part of SEN parent life

    I am completely exhausted and it’s not quite 3pm yet. This morning my husband and I drove 20 minutes down the road to attend the first of four sessions for a course covering some techniques on how to deal with challenging behaviours. The course itself was in a pleasant enough space, with comfy chairs, and a constant supply of tea and biscuits, but the mental load was immense. 

    I found the mental load of the course to be a lot to handle, not necessarily because the content of the course was particularly heavy. In fact, it was largely a semi-formal format with open discussions throughout with the handful of other SEN parents in attendance. All things considered it was quite pleasant. The mental load comes from the deep dive and general thought exercise of exploring the differences, challenges, and struggles that my children face. Even when this is done in a friendly and positive way, the weight of having children with profound disabilities weighs heavy.

    I think the thing that sometimes makes it feel harder to bear, is the frequency with which I have to attend meetings that highlight all of this. Sometimes it’s in-person meetings, online sessions, or even just filling in forms, but it all takes its toll. I think every SEN parent will relate to this, but for me it can feel extra challenging when I have to do everything twice over due to having two SEN children. 

    It wasn’t that long ago that my husband and I needed to attend the EHCP review meetings for the children. We opted to do these in person and in many ways, it was a wonderful chance to catch up with the twins’ teachers at school. We were able to discuss the ways in which the children have met their targets and we focussed on the next targets we hope they can meet, and talked about the ways in which we can help them achieve these. It’s all positive really, but it all engages a part of my brain that triggers the weight of having SEN children. 

    I don’t think parents of typical children always realise the intensity of all the admin that comes with a SEN child, and also, the frequency. As well as the course this morning which ran for three hours, I had to have an hour long phone call to sort out some issues with our Motability vehicle, and tomorrow morning I have an appointment with my daughter to see if we can qualify for a referral to wheelchair services. I am always incredibly grateful for the support we receive from various services, but my goodness it’s tiring. I often say it, but dealing with the admin that comes with SEN children is a full time job in itself. 

    Soon, the children will be home from school and I will put all the thoughts of forms and courses to one side and focus on the actual care-giving part of my day. Tomorrow morning my son will get on the bus to school and I will take my daughter to the GP for our appointment. After that, I will drop her off at school, take ten minutes to stare into space in the school carpark, and then resume the phone calls, forms, and meetings that need to be dealt with. The cycle continues!

  • The Shituation – a short story

    The Shituation – a short story

    You’ve had a long day and it’s time to put your six year old daughter to bed. A quick rummage through the pyjama drawer, and you find the pretty pink pyjamas you bought from Tesco last year. Why don’t you put her in these more often?

    Teeth are brushed, cuddles are had, and bedtime goes very smoothly. You breathe a sigh of relief – it’s not always like this. Sometimes there is kicking and screaming. Parenting a child who is non verbal and doesn’t understand a lot of the world around them is hard. How do you explain to someone who doesn’t think they are tired that it IS in fact bedtime?

    She settles into her bed with a book to look at, happily cooing under her duvet. After half an hour she is quietly snoozing. All is well with the world and you have a few hours of precious time to yourself before your eyelids will droop and you will feel the pull of your own bed. 

    It’s 2am and you startle awake to a noise – a shout? No, it sounds more like a chuckle. You jump up and stumble to your daughter’s room, trying not to trip on the toys scattered on the floor along the way. 

    The second you open the door you are hit with a smell unlike any other. Fumbling for the lightswitch, you hope and pray that you are somehow imagining the stench that has started to make your eyes water. 

    The lights click on and suddenly you are wide awake. Your daughter is sitting up and grinning at you. She is covered in poo. You notice the crotch poppered vests and zip-up-the-back suits you had carefully left by her bed as a reminder to yourself. You suddenly remember why you haven’t put her in the pretty pink pyjamas recently.