Wednesday 14 October 2015

A Side of Autism: Time For a Reality Check (and Music Therapy!)

So if you didn't know - I've been filming YouTube videos lately mostly "vlogging" (video blogging) my experience (thus far) as a mother of 3 kids and 1 having autism and another with SLI.
I will be filming about other topics soon - but so far - the things that have come up most frequently in my life lately - has been V-Man's autism!
That and a friend has asked me a list of questions - so I thought it'd be cool to try and make short less than 10-minutes videos about those various topics!

He's currently at overnight care and I took a short 39-seconds long video of what a V-Man melt-down is like (then added some of my own vlogging in there).
So please, turn down the volume PRIOR to watching it or don't watch it at work because your co-worker is probably wondering why you're watching such a sad and torturous video!
As you can see in it, he's screaming, yelling and slapping/pinching himself.
He was actually quite easy on himself to be honest!!  Normally it's a straight 5-minutes (or more) of slapping his own face.  He was just done with music therapy and wanted to leave and he couldn't figure out how to open the door.

A few weeks ago, I was approached by a Master's student inquiring if I'd be interested in having the V-Man try out some music therapy.
I warned the Master's Student (MS) that V-Man is non-verbal, I'm not sure how he'd react or if he'd even sit in one spot for 30-45 minutes...and I stressed that I was worried it'd be a waste of time for him.
MS said it was fine because he wanted to study children of a particular age and with both a disability and without.  The key thing for HIM is that the kids understood English to some degree - as the instructions and songs would be in English.

The first meeting was a brief intro and once V-Man discovered the CD-player - he was done with learning about instruments or singing songs.
I'm happy to say that the second meeting (it's twice a week until almost Christmas) was more successful on my end because he was familiar with the bus stop compared to the first meeting - where he kicked and screamed and I had to drag/carry him to the building.  So that made it easier.
He even touched the drums with his feet (which we had to nip in the bud because he wanted to stand on them) and then with his hands nicely.
WAHOO!

Then I started filming during the good-bye song because V-Man was having a melt-down and was just simply done with it all.
I have been debating internally with myself on whether or not I should post this video but then I thought, "Why not?"
Here's my reasoning, before you think I'm a crazy parent:
  • I didn't start the tantrum/melt-down.  I didn't want to - but I did want to show my friends and family and also others - what it's really like for us to have an autistic child cry.  
    • The oppourtunity to share a snippet of his actions was enough for me and I believe, enough for your own ears too.  
    • Just imagine hours of this on and off throughout a day...
  • That I really don't beat my kid and that those slaps and pinches are truly self-inflicted.  Not that I think nobody believes me - but also if you see another child with a disability - perhaps they really did do it to themselves.  Here's my proof that my kid does it to himself at least.
  • That not all autistic children react the same.  The spectrum is huge and the big league scientists are constantly trying to figure out what an autistic person feels/thinks like.
    • I wouldn't put all of the autistic kids I know in one group and say they're the same because they're not.
  • It is in NO WAY a "shaming" video because that is simply not my intent whatsoever.  It's my only way to share what he's truly like when having a melt-down.  Other than have him visit you and have one in front of you.
    • I have no reason and no urge to embarrass my children so publicly on a platform like a blog or YouTube - especially since I would never want the same to happen to me.  So please keep an open mind when watching the video.
I cannot soothe him properly in this video because I am filming (and with limited memory space on my phone) and trying to calm him down with my voice and with one hand.  Normally we take both of his hands and stroke our face or hair and try to remove him from the uncomfortable situation.
I truly am terrified that some day he'll yank my hair out - but for now will keep my fingers crossed.

We've TRIED giving him something to hold in his hand (something I forgot to mention in the video) and he ended up beating himself with whatever the item might be.
  • Plush toy
  • Dinky car
  • Jingly keys (yes that hurt a lot)
  • Food (pretty messy and apples are also painful)
So I know the video might be painful to watch but I hope you're able to see what it's like on my side of being a mom of an autistic kid with super strength and I hope this video somehow, raises autism awareness.
I was initially inspired by this article in the Huffington Post to share a snippet of my son's life on YouTube.

Thanks so much for reading my blog, following me/subscribing and so on - and for tolerating my 4-hours of sleep last night/super tired tears (but hey! class finals are finally done!)!!
BIMU


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