Our simple, but busy half term ,is leaving our hearts full💙but the anger though!🙃
Like most special needs parents I do dread the half terms, and just the break in routine can be enough to send my child into a downward spiral of anxiety which controls everything we do , when anxious Oscar shuts down will not play ball for anything this usually lasts around a week or so before he starts to come out of it , it’s really hard on everyone and we are totally lead by Oscar and have to all work really hard to keep Oscar regulated this is despite medication ,and that’s why I dread as there’s one of me and I worry everyone’s not getting enough of me or what they need , his routine is everything in terms of balancing him so he feels calm enough to function , I decided to plan the week so we had lots of structure get up and out by 930am each day and do something each morning( I know what a complete wally😂)
I’m going to admit right now this was over confident, and it didn’t really work at all😂I would say out of all the school breaks so far this has been the hardest , Oscar has screamed the best part of this week , the only plus is we have got up and out and done something manageable each day ,which has benefitted my other kids and saved my sanity as I would have been a prisoner in my own home, and it was a choice stay home with the screamer or go out with the screamer !!!!
It hasn’t been all bad Monday and Tuesday we’re 50/50 but Wednesday , Thursday in the morning we had a lovely time at wild play natures way it’s close to our home and there really inclusive of special needs , very accommodating if Oscar and other special needs children and I always feel really welcome there , the lady that runs it makes allowances for me parking incase I need to make a quick exit, and this visit oscar stayed 40 minutes longest to date it was lovely for him to experience this group ,as it’s not only for special needs but they really pull out the stops to make it inclusive for all abilities, and when the lady says we are welcome anytime she really means it which is really lovely, as I’m sure many places wouldn’t welcome oscar back with such open arms! He can display some very unpredictable behaviour and Friday o my god ANGRY BIRDS THE MOVIE !!!!! it got to the point on Friday, we’re we had arranged to meet friends for a walk at a local farm/ play area , it gets busy so we went early to avoid crowds, it was ok got parked easy and Oscar usually really enjoys the freedom of stomping around in his wellies getting muddy, he’s been known to lay in puddles there before he loves the freedom and the animals, but not today! He was particularly prickly from when he woke up and as soon as we arrived he said oh no not this! He was screaming and crying I managed to get his backpack on and we entered hoping that he would calm once he realised where we were , and had met with friends ,but a rage was building inside Oscar and after 15 minutes of his arching his back and screaming NO, NO I decided to turn around and exit, we were getting so many looks, some of sympathy , some dirty looks , some judgy looks ,I mean let’s have it right, he draws attention to himself , it’s a busy place we are walking towards a sea of people, all with their happy kids and I’m going the wrong way with a child who appears neurotypical and naughty!!!! ,
people are not that kind really, to me it’s clear that there’s a problem, when I see parents struggling I always give them the look as if to say I’ve got your back man , but it’s on my radar I suppose , so i stick my sunglasses on ,head held high avoid eye contact with these judges ! Of what? I refuse judgment🖕🏻 and I manage my child, and the situation, I make sure he’s ok and we leave , on the way out there’s a QUE and the lady who works there says leaving already? Oscar still looking possessed convulsing in temper, I didn’t even reply I just kept walking!
When we got home oscar has a serious meltdown trashed the living room ,there were books being thrown like frisbees ,and then a bottle of juice a full one, flew past my head! So I made a desision to call his consultant as he started becoming angry on Wednesday , today was Friday and he’s still going and it’s building! I needed advise , so I call and guess what he’s not there !!
Oscar was given new medication for his anxiety the week before, it was too strong, it was awful he was calm but not oscar , lights were on knowone was home!!!! We sought advise and were told to Halve the dose as it was too strong, but now he's angry so it’s trail and error, talk about keep me on my toes!!!i just want-him to be calmer not angry ,and be happy , so after trying to explain to a different doctor the story so far, where we are, and to get some advise, I was told as his mum it’s my call! Either raise it slightly or stay as we are , we decided that as the recommended dose for his weight is 2.5ml but he’s been having 1.75 ml and it’s making him angry ,we would try 2 ml.
And low and behold he is calmer more compliant and happy to reason , hopefully now that after two weeks, of being so worried about this, we might have finally found the correct dose to suit him , that’s the thing with medicating it can have such dramatic effects of its too low or-too high , I used to think it’s, get the medication administer it and ta da! But it’s really not at all , it brings new worries, new heartache and challenges! Well it has for us anyway .
So to round this blog up ,half terms? School breaks!! For special needs kids are not the welcomed break your other kids long for , where they can chill and do fun stuff🌈 , for special needs kids it’s everything they hate , everywhere’s busy, noisy, crowded there’s no routine! Oscar really struggles and it takes him a good week once school starts again to feel settled again, and in his mind he’s just had school holidays at Christmas ,it’s such a short term it really is , I’m not sure what the Fix is but I was over confident in my planning , the week didn’t work out as well as I hoped😶
In heinsight I could have added a few tools to assist me ,a bit better to help regulate him like I could have used the now and next board with an egg timer, as suggested by his OT at a therapy session at the end of the week !!!!!!!i think next time I might have the therapy at the start, so I can pick up a few tips as I think her suggestion would have worked , we do try and use a visual timetable with him but he’s dismissive, but an egg timer and adding sound is such a good idea as he gets so absorbed in what he is doing it will allow his brain to switch to another activity so I will be using this in future.
That’s the thing about overconfidence isn’t it!😂it can be a killer , here’s me thinking I will be fine with a pair of wellies in the car and a pack lunch!💙💙