Today I'm feeling a little sad. Youngest is off school again with joint pains in his legs. We've just been for a blood test and he is awaiting an appointment later this month with a specialist in London. I'm pretty sure I know what the diagnosis will be but it hurts to see my 13 year old son in so much pain that he is hobbling around.
I spoke to our school nurse and, because of his school's hilly campus, it is likely that we will have to draw up a care plan for him so that, if the pain persists, we find a way for him to attend lessons with as little discomfort as possible. Once a diagnosis is made, I will talk more about the condition as, although classed as a rare disease, it may be much more common than thought.
This has made me realise even more how futile it is to have expectations, high or otherwise, when you have children with special needs. Whenever things are going well and you rest on your laurels, you might think it's ok to concentrate on other aspects of your life, such as work. This is always a mistake. So it is necessary to concentrate on everything at the same time - to keep your eye on all the balls in the air for whatever you have to do.
This is, inevitably, stressful and, as some have recently discovered, can make you short-tempered with those who do not try as hard as they might. It also means that, occasionally, one of those balls is dropped. For example, I have been so focused on my work and the children that sometimes, my poor husband doesn't get the attention he deserves when he has supported my new, busier schedule and cheered me on.
I expect a lot from myself, however, and set myself high standards. In practice, this inevitably means I often disappoint myself when I am forced to let someone down. Today, for example, I was supposed to be going to Woking to attend an SEN meeting. However, Youngest 's urgent blood test meant I had to let someone down in order to do something more important. Unavoidable, but it still didn't make me feel good. Happily, we managed to have the meeting later via a conference call. Then I was supposed to be meeting a new friend when I got a call to say Son1 also wasn't well and could I collect him at lunchtime? Meeting cancelled.
I have also, up till now, expected a lot from people around me in terms of people doing their best. I don't care what anyone's abilities are, I just care that they try their best, whatever their best is at that moment in time.
Is this unfair? Actually I don't think so. No one can give their top performance all the time - our energy varies from day to day. But note, I said "their best whatever their best is at that moment in time". It is something that I really want to impress upon my boys, despite their undoubted and, in Youngest 's case, increasing, difficulties.
No one can expect more from you than your best, whatever that may be, but you should give your best at all times even if it isn't as good as it was yesterday. I mean, who wants to be a slacker? I think if you go to your deathbed knowing that you tried your hardest to achieve your goals (whatever they are) and make life better for other people (if you are able to) then you can die happy.
For some this may be achieving great things, for others, the gains may be more modest, but it's not the size of the achievement that matters, it's the effort. For people with a learning or physical disability, what may look on the face of it to be a small gain, may indeed have actually been a colossal effort worthy of huge praise.
I am also lucky to be involved with people who do more than is expected, who go the extra mile to do a great job and those who frequently think of others before themselves. These people inspire me to keep on keeping on even when, as today, I want to bury my head under the covers, go to sleep and wake up to find myself living in a fringe universe where the good live long and happy lives, where no one is hungry and where kids are pain-free and universally well-treated.
Maybe in another lifetime.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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I know that feeling of the head under the duvet – Today started off badly with son 1 refusing school, the end of my tether having been reached after another interrupted night of sleep from son 2, I reacted rather more emotionally than I would otherwise. This clearly upset both boys and after eventually delivering son1 to school I took the dog for a walk. Towards the end of the walk, I look up into the distance and see a child walking towards me, I squint a little trying to make out the figure and soon realise it is son no 1, having done a runner from school due to a totally avoidable incident with his tutor. Apart from being bewildered that a vulnerable child (son 1 has ADHD/HFA) could have left the premises, It amazes me that an adult (in this case a teacher) cannot stop a minor situation escalating in to a situation that went completely out of control. I understand and appreciate the stresses that teachers are under these days but really!!! Where’s that Duvet!!!!!
And you, Mrs, are one of the people I was talking about who goes the extra mile – you are a great parent xx
Couldn’t agree more. I received a wonderful card today from a special friend and thought the quote from Max Lucando was pertinent to your post…
There are things only you can do, and you are alive to do them. In the great orchestra we call life, you have an instrument and a song.
Your song makes a difference to many x
Thanks Donna, it’s a great quote!
It’s hard trying to juggle everything isn’t it. But when you have children, they *have* to come first, no matter what. When they have special needs as my daughter does (she’s autistic), the juggling becomes a part of everyday life. People who don’t understand that aren’t real friends – I’ve learned that the hard way over the last 12 years.
CJ x
Thanks CJ!
How uplifting and refreshing you are! ….. I hope son2’s pain becomes more manageable soon along with your own….. am keeping you in mind.
Thank you Tanya – not that I feel either right now!
I understand what you’re saying. I have had to withdraw from a lot of my voluntary work to concentrate on the situation we’re facing as a family. I didn’t like doing this but I learnt that I had to be kind to myself and to modify my expectations of what I can achieve. Family had to come first. Still I’ve managed to hang on to a few hours of support work a week but the effort that is needed to combine this with my kids is massive. People just don’t realise how much energy and effort it takes to manage our special needs kids and the other bits of our lives as well. Don’t be too hard on yourself Tania; you’re doing a fabulous job raising your boys and helping others.
PS sorry to hear about your son’s difficulties and hope all goes well with future appointments. We are not experiencing anything as serious as your son but we do have a family run of hypermobility. My aspergers daughter has been getting problems with her knees and ankles and it has got so bad she has been in tears and limping around. The paediatric physio commented on her weak muscles and how unusual it was and prescribed exercises but the NHS threw her off the list because I mixed up an appointment. We’re now looking for alternative help but I am disappointed that there isn’t enough understanding of aspergers syndrome and these associated muscle/joint problems.
I am sorry to hear you are feeling sad,
Your post to-day is so true, and also the comments, as my G.P. said to me to look after your son (he has Prader- Willi) and has now had a diagnosis of autistism you must look after yourself! eaisier said than done I thought but I have tried to take it on board – doesn’t always work mind you but I try my best.
Maureen
Ah Tania, you echo what I feel a lot of the time. I get frustrated when we as parents are doing absolutely everything we can to make sure our children have the most wonderful and inclusive life possible, and people that could easily do such small things to assist you with that, are either incapable or just unwilling. I then realise that my energy being frustrated about it is just being wasted and try to move along. I try to keep a few things on the go ‘for me’ but they are always the first thing to go on the back burner (most of the time) because the childrens needs come first. It’s ‘just the way things are’.xxxxx