Understanding Sensory Stuff (Part 2)

So….. like i said, after the penny dropped, i got on with it. Like most parents with an early diagnosis i felt i had no time to waste. We were prescribed ‘Proprioceptive’ input at regular and frequent intervals throughout the day. Don’t let this be daunting to you, i didn’t get it perfect all the time, life still has to happen, but i put it at the forefront of my mind and did my best. The results were amazing i must say, and noticable within a few weeks.

Proprioceptive input is a MUST for these kiddos, i now understand. It really did get Joe ‘off the rollercoaster’ and for the first time, i was beginning to get to see glimpses of my son. And him of me for that matter. We began this therapy around 8 months ago and i cannot list all this things my son has now explored and done and put together for himself over that time. I believe he, and we, would still be lost without this vital piece of the puzzle.  I found it was a major supporting element riding underneath all the other tools i have worked with my son.

So what is Proprioception? Well, I didn’t know it existed until we had to. It’s actually one of the ‘senses’ of the body. Like everything about the body, you take it for granted that it just ‘works’ until…. It doesn’t. I’ve heard that lack of Proprioception is like having a backpack on your back in an elevator full of people. Lack of body and spacial awareness. ‘I can’t feel my body’ or ‘I don’t know where my body ends and the world begins’. It explains a lot of ‘Autistic’ behaviours such as head banging, hand flapping and leg slapping. They are just trying to self-regulate in the best way they know how! How creative! But, we can help these kiddos find a better way to get their sensory needs met without hurting themselves in the process. Proprioceptive input also gives these kids a sense of calmness they’ve never known before. Anxiety levels begin to decrease. Learning begins to open up as the ‘flight/flight’ part of the brain begins to deactivate. Who knew this could be so effective? Not me, until I saw the changes in Joe.

Firstly, we used a weighted vest which engages muscles and joints more proactively (this is how you get Proprioceptive input)…firstly for 20min at a time, every hour and slowly built up his time from there. We also used ‘chewy tags’ (that’s what i call them) around his neck (they look like army dog tags lol). Chewing is a great way for them to get the input and help them concentrate as it engages muscles and joints in the jaw (proprioception!). I worked this out about Joe long before I knew about sensory intervention. At barely the age of 2 I knew if I gave Joe an apple to work on while I was in a shopping centre it would buy me another 20 min to shop. It calmed him. I didn’t understand why, he hadn’t even been diagnosed yet. I just knew it worked! Now I know why!

We also started using the Wilbargar Proprioceptive Brushing Technique ( you need a specific brush for this) every 2 hours – well, in theory. Sometimes i was lucky to get it done 3/4 times in the day. Anything that engaged Joe’s muscles and joints. Trampoline, bouncing on the bed, throwing him (gently) into a ballpit (which we now have in our loungeroom) or onto a bed full of pillows and gently squashing him with the pillows. Yes it’s laborious and time consuming, but it’s not forever. This is effective early intervention and every time my little guy looked at me or smiled or learnt something new, it reignited my vigor to do it more. He was blossoming from my efforts. This was something I COULD do to help him that didn’t require 100’s of dollars an hour. Just my muscles and effort and time. 

But like everything, it can be improved and revised. Sooner or later Joe was not going to have me on hand to do this for him all the time. Another set back was the design on Joes jacket was such that it began to leak gel through manufacturing problems and it was losing effectiveness because it was losing weight. We had to find other resources. 

It was then suggested we try compression clothing instead. We managed to find an Australian company (I coincidently remembered the name on from a Facebook suggestion) and ordered some clothing. I can not tell you the difference in Joe in a week was nothing short of a small miracle. It was giving him a level of input ALL DAY that I just couldn’t give him. A weighted had lifted off MY shoulders (pardon the pun). It’s still early days for us with this clothing put I tell you what, I believe the testimonials on this because I’m seeing it. AND the language is starting to come. Remove sensory obstacles and see if it comes on its own…We were already seeing it before, but this is on a whole new level. I’ll keep you updated and write more on this as we go…. 

Click here to check out:

Jettproof sensory clothing (I have no financial interest in this company, though it has been created by a mother of a child on the spectrum, so they ‘get it’…just a suggestion as a useful resouce) 🙂

P.S. Weighted blankets are also used as a way to deliver input to the muscles through the night, but if your child is like mine, he kicks off the covers in the night. Another advantage to compression clothing is it be worn through the night as an alternative… Another option 🙂

Layla x

Understanding Sensory stuff! (Part 1)

One thing I understand now, which I didn’t before is that the major reason my son’s behaviour was so different from other children’s is because of his senses. He wasn’t broken needing to be fixed, he was just fascinated by things that appealed to him and calmed him. Playing with shadows and light. Looking at the way the wind moved the leaves. Spinning objects (not so much any more). Textures under his feet. A heightened sensory awareness of the world around him made his behaviours and attention towards people so different to other children. He’d placed so much importance on these sensory experiences and his ‘need’ to do it that our relationship to him had faded into the background somewhat. So, his development of social understandings, one being language, had been delayed.

The first port of call when Joe was diagnosed at the early age of 2, directed by our Paediotrician, was Speech Therapy. The first speech therapist we came across tried to immediately apply the Picture Exchange Communication System (PECS). Of course, I knew nothing about any of the above I’ve just mentioned at this point. Nothing about sensory stuff. I just thought how on earth am I going to get this kid to give me a card for things he wants? There just seemed to be so many things before that that were missing in the equation to me and it just didn’t seem feasible. Made sense; yes. But he didn’t seem ready.

I followed by gut and waited for an appointment to come up with another speech therapist who seemed to specialize in the field of ASD. I had to wait a few more months to get in with her and it was an agonising wait. I wanted to help my child NOW. I had no patience at this point because the ‘diagnosis’ had me in an impatient flap. I didn’t want to waste one more day in helping my child. But regardless, the wait was worth it.

She has Occupational Therapists underpinning her role as a Speech Therapist. Immediately she had a ‘Sensory Diet’ prescribed for Joe’s sensory needs. “Ok, his sensory needs are blocking his development”. She said. “Providing he has no intellectual impairment, which at this point it’s hard to tell”. “It’s like trying to teach someone to speak Chinese whilst on a rollercoaster. Let’s get him off the rollercoaster, onto planet Earth with the rest of us and see if he can develop speech naturally”.

That took a while to sink in. What are we doing again?!? I just did what they told me to do. Kinda half-heartedly at the start, until the penny dropped, then BOOM I got it. WHY we were doing the sensory diet made sense to me, and so I threw myself into it.

Keeping an open mind….

This is a completely different take on ‘our’ kids. I have come across this more than once on our journey so far and the more I look into it the better it makes me feel. Our children are here to make us all shift and grow and change everything we think we know about our world. Look into the term ‘Indigo Children’. It is worth a look. Here is a link to a documentary a friend sent me this week. I thought I would share as some of you may be familiar but some may not…. I know my son definitely fits into this idea and it certainly helps me to know maybe he chose me and that means he has faith in me that I can do this journey with him, and that I AM good enough…. AND it is a privilege to be chosen as a parent to one of these world-changing souls….

Indigo children documentary – press here to view (1hr 9min)