Things I wish I had known prior to any diagnosis!

So, none of us ever want to ‘get it wrong’ as parents do we or indeed admit that we ‘got it wrong’? However, in this very special world of living with Special Educational Needs and Disabilities (SEND), we are even more likely to get things wrong particularly prior to knowing what those needs and/or disabilities are. Raising a neurotypical child is hard enough, but this is a whole new level. So don’t beat yourself up, we are only human after all!

Post initial diagnosis of Atypical Autism, I had one of those light bulb moments, part of which was a massive feeling of guilt. I look back on events, just bog standard daily events and cringe at how wrong I got them!

Just picking one example for now, when parenting a neurotypical child, it is not only common, but an expectation that your child adheres to a daily hygiene routine, with your support as the parent. Almost from birth, you quickly try to get into a ‘good bed time routine’ of tea, bath, story then bed right? All in the hope that your child will be clean, settled, calm and ready to sleep – ohh and of course so that you, the adult, can finally get some rest and peace lol! In turn, when teeth start sprouting, you also then add in ‘teeth brushing’ to this routine. Likewise with a morning routine, it’s good to have routine right?

Well, imagine trying to carry out the bedtime routine, that you have worked so hard to perfect, when your child starts to resist this…I mean REALLY resist! Imagine, your child slowly but surely start refusing to: get in the bath, get washed, have their hair washed or refuse to brush their teeth?! And what do you mean you aren’t going to bed? Or indeed similar difficulties in the mornings: refusing to even get up, refusing to get dressed or indeed even leave the house! At the time, I didn’t see what I now know….

At bedtime, I did what I believe most parents do and would have done: I ran the bath, removed clothing and dunked her in – simple, you are having a bath. Then I’d rub the soapy flannel over her body and persevered to add the shampoo to her hair whilst trying to wash it despite the screaming and wriggles to get away – and repeating the same process with the conditioner! Having almost wrestled with her then to get out of the bath (having wrestled to get her in the bath!), to get dried, to then get into her pj’s, I then tackled the next challenge! Teeth brushing! So, I squirted the toothbrush onto the tooth brush and stood my daughter in between the sink and myself and brushed her teeth whilst she tried to wriggle free, tooth paste being spat in every direction.. Do I feel guilty now…..yes I sure do!!

The reasons for my guilt is that I was totally oblivious that my daughter had massive sensory issues. I had no idea that the water on her skin, the flannel on her body, the shampoo in her hair, the towel on her skin, the toothpaste (that was too strong in flavour) in her mouth etc were causing her great discomfort due to the autism. Nor did I know at the time that even the mention that it was bath or bed time or indeed waking her and saying ‘good morning’ were actually demands that provoked extreme anxiety! Something that I later learnt to be caused by Pathological Demand Avoidance (PDA).

The trials and tribulations that came with even getting dressed for school (at the tender age of 4/5yrs), were ones that caused an enormous amount of distress, both for my daughter and myself. I just couldn’t understand that the same (clean) blouse or same pinafore wasn’t comfortable and ‘didn’t feel right!’ – she often had to change up to six times before being able to settle on a set of uniform that was bearable. Then on top of all this, came the sock issue, taking it up a level further and despite investing in seamless sensory socks (at £6 per pair!), there was a point where she even needed to wipe each individual toe with a baby wipe before being comfortable enough to put a sock on! It didn’t end there either as she then needed to get the FOOT with the SOCK into a SHOE! I again didn’t realise that this was due to sensory issues associated with autism and my daughter’s tolerance levels varied day to day. Also, something else that baffled me was how could she not bear her hair being brushed but NEEDED to have the hairband done up as tight as possible?

Another huge battle for us was getting out of the door – sometimes it would take up to two hours! I would be getting more and more stressed as conscious that she would be late for school (as would her siblings) and in turn I would be late for work. But again, I was unaware of how difficult this was for her. Now thinking about this, when you break it down there are dozens of things that need to be done between waking up and getting out of the door, no wonder it took so long when every element of that routine potentially caused her difficulties!

I’m ashamed to admit that I even once took my daughter, aged just 5yrs old, to the police station due to her continuing aggressive behaviours at school. Having threatened her with this on several occasions I had to follow through right? That’s what a ‘normal’ parent would do yeah, I said it so I must do it! So having been ‘talked to’ by a stern officer, because they have to put the fear up them right, we came out of the station only for her to punch the air and shout ‘yay, they didn’t put me in jail!’ – so that was effective, not! Also, with hindsight, I, me, her mummy, was punishing her for behaviours that were not within her control, what was I thinking?

I also used to put in sanctions at home for negative behaviours in school. Whilst the school requested I put in rewards at home for positive behaviours in school, at the time I did not think to question this. I did not question the reasons for her behaviours or why she was lashing out, I was more fixated on trying to ‘work with the school’. For this I also feel guilty! School was so anxiety provoking, with so many rules and without the correct support. As a result she was trashing the classroom, being disruptive and hurting children as well as staff.

So what did I eventually do when I was made aware of her needs? Well I stripped away my ‘normal’ parenting, literally everything I had learnt to date and basically threw it out of the window! That sounds much easier than it was in reality. I had brought up her sisters in a certain way, what I thought was in the right way: to be polite, to respect their elders, to do as they are told when they are told etc. This is not to say that I didn’t expect the same things from my youngest, but it did mean that my approach needed to change. Yes mine, not hers. It went totally against the grain for me, but something had to change!

Even the simplest, smallest changes helped a little: changing the toothpaste to a much milder minted one and in fact I changed it up even further and settled on a strawberry flavoured one. I bought an autism friendly toothbrush, yes there is such a thing! I downloaded a toothbrushing app that sang to her whilst doing her teeth. I made bedtime fun – a ‘race’ to see who could get showered (yes, I swapped up a bath for a shower) first. I even bought giant sand timers to assist, so that it wasn’t actually me telling her how long we had got to do this, that and the other – it was the timers!

The biggest game changer for us was post PDA diagnosis, I cannot stress enough how different the strategies are for a child with PDA – even compared to the strategies for a child with Autism (almost polar opposite!). If you suspect your child to have PDA, then I would highly recommend looking at the PDA Society website (https://pdasociety.org.uk) where you will find amazing, enlightening and even game changing information.

I had to even change the way I spoke to my daughter, being one step ahead the whole time, pre-empting reaction, carefully choosing my words and instructions.

Turning ‘normal’ parenting on it’s head is a very difficult concept to think about let alone implement! Ultimately, it makes you feel like you are handing over all control, but in fact you are not, you are simply enabling your child to feel like they are more in control which will help to reduce anxieties and increase their tolerance levels, making day-to-day tasks more bearable. 

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4 Comments

  1. Katie Studley March 24, 2019 / 9:06 pm

    Hi
    I love this thank you for sharing. It reminds me of days gone by and how many changes we have made .. some for long term some for a day or two. You certainly have got to adapt with your child.
    Katie x

    • Erika Freeman
      Author
      March 25, 2019 / 8:14 pm

      Hi Katie
      Ahh thank you and my pleasure. It’s amazing how quickly changes are made once you have a true understanding, of your child’s needs, isn’t it? I felt it important to share though, the things I feel I did wrong so others hopefully don’t beat themselves up for ‘getting it wrong’ (for want of a better phrase). You certainly do have to adapt with your child and it is often a very steep learning curve x

  2. oprol evorter May 24, 2019 / 7:05 am

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    • Erika Freeman
      Author
      June 2, 2019 / 11:09 am

      Thank you so much for your kind comment!

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