As Written By Her Mum Christine Robinson Twinkle. Edited by Kenneth Ingram.
2nd September
First day back! – it went well yay … As predicted Amber waited till she got back to mine to release her stress. I got a few digs in the arm, tears and a lot of “no” but she calmed down after a little while and said sorry. Then got her bossy head on with Paul telling him “you’ll be in trouble you pain in the bum” haha
4th September
I’m super proud of my little lady. Getting back to school has gone smoothly apart from a slight blip when she came home on the first day. I’m more proud in a funny way that she is actually quite an adaptable child which isn’t a usual thing for children with ASD and the specialists are impressed by this also. Although having parents that are not together wouldn’t have been our plan, she copes well with the slightly different routines in both houses and is more open to changes because of it. There are some things of course she will not tolerate changing and her controlling behaviour still gets out of hand, all in all her progression is amazing. Good job Amber Wood.
5th September
Grief – I have a few friends on my list who are autism parents and one post struck me this week, which was how there’s an element of grief when you realise your child is diagnosed with a lifelong disability. There’s times when you can forget that there’s something different about them and you can become comfortable for periods of until it shows itself again. Watching our children grow up can nip at the heart at times. You become more aware yourself as a parent of the delays and how children of the same age are progressing. Of course there’s the thing where you never compare children and they’re all individuals, but in some cases you do, do that. We question the future a lot .. Will they be able to live on their own, get a full education, work, find love, have children, have true friendships even. As well as the joys of things they do and show us, there is a constant sadness too, that sadness isn’t because we want a different child, it’s the uncertainty of what is to come for them and how we as parents make that happen. How the choices we could safely make on our own aren’t instilled in the beautiful baby we gave birth to and may never be learnt by them.
5th September
First week of school done and we’re doing a happy face. Miss F says she’s had a small blip once but other than that she’s done well. Can’t ask for much than that! If I’m honest I’d be proud even if she had 50 meltdowns. The way I see it she has to battle through so much before she even starts to learn or put out good behaviour so just getting her to school is a total win on her part.
7th September
I study Amber a lot and one thing I find a little unsettling, is how she can find things funny that really shouldn’t be. We were watching a film last night that had a plane crash. Passengers screaming, falling everyone and a big boom when it finally hit the ground. Amber found it absolutely hilarious and commented ” naughty aeroplane” now I know this is most likely a sensory thing and she gets different things out of different situations, but it makes me slightly concerned. She finds crying or anyone else discomfort that she doesn’t know very amusing. I know this is a common thing, but it’s probably where she is going to be most misunderstood.
10th September
Amber’s first week and half back at school has me bursting with pride. Not only did she actually do her reading homework, she got to show the headmistress her beautiful handwriting and got a sticker!! To be honest the handwriting was pretty awesome. Well done Amber Wood again can put this down to brilliant teaching and Miss F is of course still a star
12th September
What a morning! We started with a meltdown and then went to so much cute I nearly cried! Amber woke up and did not want to come out of her bedroom, she started crying and shaking and telling me “mummy I’m scared” after trying to figure out what had upset her so much, she then switched to full on meltdown mode. Couldn’t get her dressed, wouldn’t leave the house and we were late for school by the time she eventually calmed down. Straight into assembly where she was awarded a certificate for awesome handwriting. Watching her go up and mouth the story along with the headmistress reading it out was so heart melting and then she was asked if it was her story to which she proudly exclaimed “yes!” I’m happy to see that she actually enjoys being praised for good things which she never used to do.
15th September.
Meltdown Monday – so we didn’t get off to the best start, the grass cutters with their loud buzzing sound had her waking up immediately irritated and its bin day where we are so her walking route was blocked… Everyday things causing meltdowns!
16th September.
Hospital – yesterday Amber had our hearts in our mouths when we got a call from school saying she’d passed out, gone blue and clammy and we needed to get there ASAP. When I arrived she was looking absolutely terrified at what just happened and clung on to me harder than ever. No one saw it coming … We took her to the hospital where all tests came back fine but there was evidence of a virus in her throat. In the morning she was her usual self, still eating, still winding her brother up nothing unusual. She will have felt something wasn’t right, but didn’t show it or vocalise it. This is extremely scary for us and also her 1 to 1 at school as any other child would communicate they didn’t feel so good. I asked her how her school day was while waiting for tests to come back as I always do.. She told me “Amber got belly ache and fell over and was scared mummy”. Vocalising after the fact she was scared meant she knew something was wrong but will associate poorly with belly ache or headache even if it’s not always what is happening. I’m extra happy that it was nothing majorly serious, but it’s a stark reminder that her sensory issues can in fact be dangerous and have a massive impact on her wellbeing.
16th September
After dwelling what happened yesterday with Amber I can say there is nothing worse than seeing your child terrified and not understanding what is happening to her and more so not being able to give her a simple explanation as to why she passed out. I accept her autism and embrace it, but my god it caused problems yesterday. She is different to most other kids and always will be. Those little things you get to take for granted like your kid will tell you when they are ill or the fact as a parent you can comfort them and take away any fear is absolutely precious. It hurt I couldn’t do that for her yesterday and watching her shake and cry and cling onto to me and just waiting for it to pass and any words of reassurance I had wasn’t making it better. Just glad it was all ok in the end.
16th September
We’re back to business tonight after yesterday’s events but it’s left a chronic pang of worry with me.. Dare I state being a parent is hard work but being an ASD parent is even more so!
Sports Day Video. Go Amber.
