Sense and Sensitivity

Q: How long does it take to get an NHS Occupational Therapy appointment for Sensory difficulties assessment?

A: I’ll tell you when we finally get one. After more than 18 months of chasing, both school and we are still waiting for one for Buzzbee.

Ok before I carry on. For the benefit of this post I am focusing on our concerns about possible sensory processing difficulties for Buzzbee, but we are asking for an assessment because we know there is a lot of cross over with attachment difficulties and we simply want to know if there is anything significant and if so how to help my ‘out of sync child’ (although I have now ordered ‘The Out of Sync child’ by Carol Stock Kranowitz)

On the whole, school and I do not agree on very much when it comes to Buzzbee, but there is no question in either their minds or mine that he has at the least, significant difficulties with sound, up to the point where he frequently combusts in noisy environments or becomes over stimulated by background noise. School once come to the conclusion that because he (and a couple of his classmates) would come in ‘highly strung’ at the beginning of the day, they would start the school day off with a spot of calming yoga. Great idea in theory, but I carefully warned them that it had the potential to have the opposite effect. Guess what? “Mother knows best”. Yoga/wake ‘n’ shake lasted the grand total of 3 days before they threw in the towel as it would take till lunchtime to calm him down afterwards!

Describing what it is about sound and how Buzzbee struggles with it, is difficult. Although there is always a degree of fear and anxiety attached to why he struggles with sound/noise, it is his reaction to the auditory stimulation surrounding him that makes it difficult for him and all around him.  Yes he finds noisy classrooms very distressing and has spent no more than an hour a week in class or assembly in the entirety of year 2 (there are of course other factors at play there also).

If we forget about school for a minute and focus on his everyday life.  Imagine the following scenario (Beeswax free. Whole different ball game with him too):

Buzzbee and I pop into a supermarket for a couple of essentials.  Buzzbee is happy and chatty, he is cool as a cucumber (well as cool as a hyper-aroused boy can be). Fast forward 2 minutes: Ears have switched off, focus has gone. Buzz has taken hold of the trolley and is swinging off it while propelling himself across the aisle, he has then abandoned the trolley and is running and skidding through the aisle (shoe surfing he calls it), he then goes on to start break-dancing in the middle of the nearest aisle completely oblivious of anyone around him, he is talking/singing at a rapid rate. He has lost control and is in orbit on ‘planet fun but noisy’. To onlookers he simply looks like a badly behaved child. And, this is on a good day. On a bad day he will completely fall apart and ask to leave the moment he arrives.

It is incredible how rapidly he can become over-stimulated and manic. Some days even my bag of tricks are no match for his sensory seeking/sound avoidance need.

"Baby, you're a firework"

“Baby, you’re a firework”

Another area that Buzz really seems to struggle with is change in light. There have been incidents when we have been driving home from my parents’ and it has gone from daytime to twilight and Buzz has suddenly gone beyond manic and the situation in the car becomes, well quite frankly really dangerous!  We couldn’t understand what was happening – one minute he was calm, happily watching a DVD or listening to his music and then WOOSH.  One psychotherapist who was supporting our local attachment group suggested it may have something to do with the change in light and suggested we try giving him a torch. Which worked wonderfully for a short while but as he has got older he has resisted this more and more. I know part of it is because he is afraid of the dark and we have often wondered whether it is more about him going into a ‘fight, flight, freeze’ state but, being overly self-reliant as he is, he cannot bring himself to let us help him (he is getting better at letting us help him at home)

Beeswax doesn’t really demonstrate any sensory processing issues and as the years have gone by I have become quite skilled at finding ways to support/manage Buzz’s sensitivity to sound and most of the sensory seeking behaviours that follow with it. Bar one! This is the only one that is noticeable for both boys and it drives me CRAZY! TODDLER TOUCH!

Why do they have to touch everything?

I understand why!

But, WHY!!!!!!!

A simple 5 minute walk to school or the park can mean two dozen leaves will have been plucked from their nice cosy branches. Flower stems will be stripped naked of their petals (if they are lucky). Bugs, bottles, stones, twigs will be picked up and fiddled with. BOTH hands will be ran across every car, window, wall, fence, bush irrespective of the damage it does to their hands or property. And don’t even get me started on supermarkets, shops or peoples’ homes. That is on a whole other level. Nothing in our home is safe either. I have joked with them that one night when they are asleep I am going to superglue dusters to their hands and feet. (Hey the amount of time they spend fiddling or sweeping their hands over everything. I would never need to polish or clean anything).

We have had to try and explain to family and friends why the boys feel the need to do this and the only way we have been able to explain it is to tell them that we believe that they cannot believe it is real unless they have physically inspected it. If we ask them to look at their behaviour as they would with a toddler, they look at us as if we have 2 heads.

As for ‘taste and smell’. Well other than Buzz being really funny about textures of some food, taste and smell tend to work to our favour and are generally a wonderful tool for recentering them.

Both boys love their food and like most children are very fond of comfort food and sometimes just the smell of their favourite meal or hot drink is enough to settle them back down. Imagine the old Bisto advert – well, that is my boys

For all my concerns it isn’t all that bad.  Although Buzz will try his hardest to avoid loud noisy environments (except discos) and despite the sensory overload that can sometime occur; the boys’ curiosity for the world and their need to use as many of their senses as they can mean we have been able to create some wonderful memories.

  • Buzzbee loves nothing more than playing with sand, be it on a beach or in a sandpit and although Beeswax would vehemently deny it, he is as fond of it as much as his baby brother.
  • Buzz’s love of music and dancing means that when we go to family parties or school discos he is probably the best behaved child there and will entertain everyone with his ‘cool’ moves. No anxiety about people in his personal space. No multiple voices/noises to try and filter out (music all the way).
  • Both Boys absolutely adore barefoot walks. Listening to their squeals is absolutely hysterical. They love doing them and know what to expect, but you can guarantee at least one of them will let out a very high-pitched squeal or walk the entire course in a fit of giggles.

 

              barefoot   mud

When it comes to sensory seeking behaviour Buzzbee is our main concern, and as he gets older his ‘quirks’ are becoming more noticeable and rather than ‘label hunting’ as some think, we want to be able to know how to best support our son.

This post is part of the Weekly Adoption Shout Out #WASO

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4 thoughts on “Sense and Sensitivity

  1. Wow! You could be talking about babygirl here!! Not sure if i’ve blogged about it yet, last few months have been hectic but cut a long story short, I requested a sensory assessment for babygirl but camhs intercepted my request and said no. So our only option, at the moment, is to look for a private OT, which seems to be quite a complex task.
    Like you, I know there are some sensory issues, smells, sounds, the way she has to lean again something all the time, drag her feet, is super sensitive to the emotions and moods of those around her etc I just want to know ‘why’ and what we can do to help her 🙂 hope you get some answers soon 🙂

    • It are starting to think we are going to have to look private too. Our camhs say it has to go through hospital which is controlled by different authority. Bumble’s family find it really difficult to understand his reactions while mine are getting quite skilled at not reacting to it (sometimes better than me)

  2. Here all OT’s who are willing to practice privately are listed on the registration page of professionally registered OT’s (ie. The Alberta College of Occupational Therapists)…don’t know if you have something like that there?
    Jonathan also has high sensory regulation stuff going on but in talking to a friend of mine who is an OT she brought up emotional regulation as opposed to sensory regulation because of his history and recommended “Calm, Alert and Learning” by Stewart Shanker . I haven’t had a chance to check it out yet (currently trying to get through some ADHD books first!) but maybe it would be useful?

    Good luck, keep us posted!

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