I would say that I’m a pretty confident and out going person. I try not to over think things and don’t tend to worry much either…or so I thought!
However having spent some time reflecting over the last few weeks, I have realised that I’ve been more stressed and anxious than usual. I think it started when Ted was diagnosed with ITP (Meningitis scare, another hospital trip and ITP…) and the doctors really stressed how careful we needed to be with him; no ruff and tumble, outdoor play, climbing and most of all try not to let him bleed…Thinking about it all now I think most parents spend their lives trying to avoid their children bleeding or injuring themselves in general but the seriousness of the ITP did scare me. I mean it’s not like we let the boys play with knives or anything but accidents can and do happen in everyday life.
I’m not really a fan of blood anyway…I’ve toughened up loads since having the boys…two emergency c-sections, various hospital treatments and procedures and more recently lots of blood tests however growing up I couldn’t even watch Casualty without feeling queezey and needing to hide everytime there was any sign of blood or someone’s internals!
I can’t actually remember the last time Ted bled (apart from after having blood tests or a canula put in…) He is pretty lively and boisterous and is contastly bumping and bruising himself but on the whole we have managed to avoid him really injuring himself. But some how being told that we needed to avoid him bleeding made me pretty anxious. I was constantly following him around, stopping him from climbing and found myself saying, “be careful” repeatedly.
He picked up on my anxiety too, he became more clingy than normal and would deliberately climb on something or headbut the wall if I was giving Toby any attention – toddlers are canny like that!
Thinking more about it caring for children with additional needs creates all sorts of additional stresses and pressures – parenting in general is such a tough job and adding additional needs in to the mix makes things even more complicated.
Ted was born 5 weeks early and had a very sensitive tummy. I was feeding him and ended up having to avoid milk, soya, egg and gluten. Weaning was challenging but in a controlled environment (such as home) we were able to mange ok. We were advised to wean by colour and to avoid any of the food groups that he had reacted to in the past. We started with whites as these are the most low risk as not many people react to them – pear, potato, cauliflower. We had to do one item at a time and not rush. We then moved on to greens and then on to reds which are more high risk – strawberries etc. Thankfully due to Toby’s lack of interest in interaction, he never tried to feed Ted anything…however we did need to be careful of crumbs.
Outside of the house however was more challenging. Toddlers put EVERYTHING in their mouths and so toddler groups, play dates and parties were complicated as I felt I needed to constantly be watching incase he tried to eat anything that he shouldn’t. I run a toddler group so I could make sure that the biscuits and snacks provided were ‘safe’ however that doesn’t stop people bringing in snacks in their changing bags etc. Constantly worrying that he would eat something that he shouldn’t made these experiences more stressful than normal and I just tried to control this by putting him in the sling to try and get him to sleep or by making sure I was constantly with him, which made holding a conversation with other people challenging.
I remember taking him to a messy play session and the children were encouraged to explore (which for most children involved using their mouths…) however large trays of custard, rice pudding and coco pops aren’t ideal if you have food intolerances!
These days as we are only avoiding milk and soya things are much easier and Ted’s reactions are only small compared to some children with very severe allergies! He just gets stomach pains and is unsettled for 24 hours or so.
Taking Toby places is also quite challenging. How will he cope? Will it be too noisy or busy? Do we have a back up plan?
We joke that we don’t travel light – remember my Have you not got a coat?! post? I’m always racing around looking for an iPad with enough battery charge to last while we’re out, wireless headphones, blankets, drinks, snacks, ear defenders, chew toys, nappies, etc etc . I do believe it’s really important to be prepared but I think some of this comes from a worry that Toby will kick off and so I try and control things as much as possible to make the experience as stress free as I can for everyone involved. This doesn’t always work (surprise surprise…) and as Toby needs constant supervision and can get very distressed very quickly I’m constantly thinking of ways to help with or planning an ‘escape route’ in my head incase I suddenly need to remove him.
I dream of one day being one of those parents (like everyone else) who takes their child to a soft play centre and sits at a table and ‘supervises’ their children from a distance whilst chatting to a friend or flicking though a magazine…with Toby one of us needs to be on the equipment crawling around with him (as he doesn’t understand waiting his turn and can lash out at other children) and the other needs to be patrolling the floor. One of Toby’s favourite tricks is to go down a slide and then run off to a table and then steal other people’s food and drinks and run off again. He has very little theory of mind and in his head everything is his and so we often find him wandering about drinking someone body else’s fruit shoot drink and have no idea who he has pinched it from! We need to have our eye on him at all times and need to be quick to leave if he starts getting too frustrated or overwhelmed as this can result in a meltdown.
Parenting brings lots of worry and anxiety and people cope with it in different ways. For me I like to talk or write about my worries. I have a journal and often sit and write about what I’m thinking and feeling. As a Christian I pray about these things, it says in the Bible – cast all your anxiety on Him, because He cares for you. I’ve found this to be very true.
Some people struggle with very severe stress and anxieties and if this is you make sure that you get the help and support that you need.
Although at times life with the boys can be challenging we are very blessed to have them. We are also thankful that on the whole they are fit and healthy and enjoy life – I can not imagine the anxiety and stress other families face dealing with life limiting conditions and uncertainty about the future. I’ve found being more aware of my worries and stress has helped me to process and deal with it better. We saw this week in The A word (which I will share some thoughts on later) that additional stresses and pressures that additional needs can place on families..but more on that later!
Big love to all the families facing additional stress and anxiety xx