What If We Didn’t Know?

Baby Bear has come on leaps and bounds with his communication even since I last wrote about it a couple of weeks ago.  In fact, even since yesterday!

The Wolf is outside with Tyger enjoying the sun.

Things are good.  Right now.  At this very moment.  And, see, that’s the thing: I don’t expect it to last.  I don’t mean in the long term or for the whole week or even the whole day; I mean right now things are good but in 30 second’s time that could change dramatically.

That’s the reality of living with any children, I know, but especially when autism is involved.

Yesterday morning things were going pretty well and the cubs were both relatively happy.  Both struggle with the transition from sleep to wakefulness so mornings can involve a lot of seemingly baseless tears (or maybe a breadstick breaking in half or me shifting half an inch to my right really are on a par with a serious injury) but all was calm…until Tyger decided he needed (not wanted, needed) to use the DVD player remote as a phone.  I explained he couldn’t because we needed to know where the remote was, couldn’t have him pressing buttons on it and he already had lots of phones to play with.

So he ran at me and headbutted me in the chest.

Later on, the Wolf and Tyger were play-fighting and messing around with foam swords.  It’s normally great for me because it burns some of Tyger’s seemingly endless energy (the energy he normally expends running off to rooms he’s not allowed in, rolling around on the floor and kicking his brother, reaching things he’s not allowed and having meltdowns)  This time, however, the game ended when – out of nowhere – Tyger gauged the Wolf’s forehead.  As in, it broke the skin and and the Wolf has a nasty big scratch.

I know kids will be kids but when your three year old repeatedly kicks his little brother or wraps himself up in a curtain or pushes his brother or throws heavy toys or hits his brother or chases the cats or chases his brother or smacks the window or…you get the idea…after being told off/being taken away/had toys confiscated (and by repeatedly, I don’t mean he’ll do it again at some future point but will go straight back to it immediately) until I have no choice but to physically stop him, at which point he’ll scratch/pinch/kick then it’s not just usual three year old behaviour.  He’ll keep going with the acting out and violence until it hits a point where he just breaks down and screams and cries and scares himself (he has – during these meltdowns – managed to force out the words ‘help me’ between wailings and sobs and it’s pretty heartbreaking).  With such a great vocabulary and advanced problem solving skills it’s very easy to assume he knows what he’s doing and think he should ‘know better’.  It’s easy to come to the conclusion he’s just ‘doing it for attention’.  I find myself saying, ‘why do you do this?’ even thought I know why.  I know he has ASD.  I know he has sensory problems completely different to his neurotypical peers.  I know he acts out because he’s actually really fracking anxious.  I know he can’t really help himself.

I know.

What if I didn’t know?  Many people look at Tyger and find it hard to believe he’s autistic.  Even the professionals I’ve seen who agree with me are quick to call his ASD ‘mild’ and ‘subtle’ and ‘on the end of the spectrum’.  If my sister didn’t have a diagnosis would I ever have suspected?

How many families are out there right now with their own Tiny Tygers just struggling along without understanding why their child who they love and try their absolute best with just seems so alien to them?  How many parents are blaming themselves and assuming they’ve failed their child?  How many are going to GPs or health visitors to be told there’s nothing wrong, even though they know something’s not right?  How many are accused of ‘indulging’ their child and making them naughty?

Even more frightening: how many parents are out there right now blaming the child?

These questions upset me.

Sometimes I feel like I’m failing Tyger.  I lose my temper, I shout, I stick him in front of the TV or his laptop when I just don’t know what else to do with him.  But I’m trying.  At the moment, I’m building up a collection of sensory tools for him.  It’s a start and it makes me feel like I’m being proactive and when I think about all the parents out there with children on the spectrum who have no clue, I think I have an advantage.  Tyger has an advantage.  We’ll get there.

I’ve commandeered his spaceship to use as a sensory room.
There are a couple of soft Henry Hoovers for throwing/squashing.
A Henry bin full of fiddle toys/light toys/fabric/biting toys etc.
Ear defenders and sleep mask for sensory overload.
A beanbag for rolling around on.

I know this post has been a little less humorous than usual so in case it’s been a bit too depressing, I can assure you there are upsides to living with an autistic child.  Yesterday we were in the garden and my mum started up the ride-on mower (we currently live with my parents – I don’t make my mum come round and cut the grass at our house!) and Baby Bear went mad.  He didn’t have a meltdown or start crying but he started shouting at the mower.  He was shouting to the point where he was shaking with the effort!  Of course, Tyger joined in shouting gibberish because he’s a little mimic and the Wolf found this all amusing.

Wolf: ‘That’s right.  You tell that mower off.’

Tyger: ‘Off!’

He does take things very literally.  Bless him.

Linked with:
Everything Mummy
My Random Musings

The Twinkle Diaries

Sons, Sand & Sauvignon
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23 Comments


  1. Chin up, Mama. Everyone has days when they feel like they're struggling- even with children who aren't on the spectrum. You're trying and that's all anyone can ask. And by all accounts it sounds like you're doing a fab job!

    #sundaystars

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  2. Sounds like you had a bad day. I think it's important for you to always remember that you are not alone and that most of us mums have days where we want to walk away for a few minutes to 're-group'. Motherhood is an amazing but extremely difficult journey and it's okay to feel down about it sometimes. To me it sounds like you're doing a great job! Thank you so much for linking up to #SundayStars xx

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  3. It's funny how they shouted at the mower, even my kids who have no ASD done the same, I think it's just kids, they sometimes scream for no reason… Being a mum, it can be tough as we go through the roller coaster of our kids behavior, however, it's still a nice feeling that at the end of the day, somebody cuddles us and call us mum. Great post! #AnythingGoes

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  4. Yeah, I'm not yet convinced Baby Bear has ASD. Tyger was just shouting because Bear was! Thanks.

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  5. I don't have experience of ASD but it sounds like you are a good Mum doing your very best. I can't imagine what it must be like for a parent with an undiagnosed child going through and not understanding. How lucky you know and understand and I hope things get better x

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  6. Such a good question, what if you didn't know? And, I suspect you're right, that are a lot of parents really struggling because they don't know. It sounds like you are doing everything you can, and are being proactive and protective in all the right ways. Parenting is a tough journey in so many ways, but you are not alone x Sara | mumturnedmom #anythinggoes

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  7. Sounds like a very trying day, but remember tomorrow is another day 🙂 Keep smiling because you're right, you will get there 🙂
    Thanks for linking up to #AnythingGoes
    Debbie

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  8. I have been assured by mums of older children with Asperger's that things *do* get easier so fingers crossed! Thanks for reading.

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  9. I imagine so many children written off as 'naughty' for years and years had a genuine problem or disorder. It just makes me feel for those poor kids. Thanks for reading.

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  10. Yesterday was easier (though, I suspect that had something to do with the amount of 'screen time' Tyger had…*ahem*) so that's something! Thanks for reading.

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  11. It sounds like you are a great and understanding mum who is doing her very best x chin up x you have wonderful cheeky children! #TwinklyTuesday x

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  12. Aww you are doing a great job! Some parents who know their child is on the spectrum still don't understand the diagnosis. I think you are leaps and bounds ahead of them because you are trying to understand and do what is right for Tyger. #TwinklyTuesdays
    Kristen

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  13. Thank you. I still struggle but maybe one day I'll understand how world looks for Tyger.

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  14. Sending you hugs! Such an honest post and yes the light moments does balance the bad but I am still sending you lots of hugs. #TwinklyTuesday

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  15. Think this post links in nicely to my latest one about parents being experts…. it's a good point, because a little more knowledge on anything can always help parents who are struggling!

    Reply

  16. I've written a post just like this and I bet many many parents of autistic children have thought this too. You are allowed to get frustrated, you are not a robot.! You do know and you are learning, adapting and doing your best! You can't do any more than that!

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  17. Aww lovely, we all have shit days. It's allowed to feel like this..we're human and we have a lot more to deal with than your average parent so don't be too hard on yourself. You're doing a fabulous job X #SpectrumSunday

    Reply

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