Welcome to Elfie’s blog

I’m the Mama of three young kids and we live in London with my husband and two cats. I mainly blog about things that make children smile, get very excited, or find totally amazing … without taking up too much effort on your part!  I hope you enjoy …

Sensory Processing Disorder & Our Boy with Down Syndrome

Sensory Processing Disorder & Our Boy with Down Syndrome

Sensory Processing Disorder & Our Boy with Down Syndrome

So what is Sensory Processing Disorder and who ‘gets it’?

All day, every day, we receive information from the world around us via our senses – food we bite in to, things we touch, what we see, smell, noises we hear and so on. Our nervous system is constantly assessing all this information and generating appropriate physical responses. Everything we do requires us to incorporate sensory information into meaningful and successful interactions with the environment.

We all have different levels of what we class is an acceptable level or type of sensation: I personally can’t stand being sticky, having a hat on my head, the feeling of socks slipping down over my heel in trainers, the kids asking me questions all at once, not getting any down time in a day/evening and there’s more to my list.

In fact, I dislike these things SO much, that when they occur I just can’t think of anything else and I have to resolve them IMMEDIATELY. I just can’t function. If I was a child I might deal with the ‘too many people talking at once thing’ by crying / hitting whoever was closest / shouting / banging on the table / have a tantrum / start wringing my hands… in these situations, their fight and flight (sympathetic) nervous system is too active and they need help from their rest and digest (parasympathetic) nervous system to calm them down and help them function normally.

Many children have very different tolerance levels with a reduced ability to integrate the information their nervous system is receiving. Some don’t realise they’re having a sensation overload (or under-load) or what it is that’s upsetting them or making them feel bored. They just feel stressed / need to hit / shout / blow raspberries all day / have a tantrum / go to sleep / behave erratically / find it hard to keep their balance / want to be by themselves / want everyone to play with them all the time….etc  Their nervous system is in overload / underload and can’t function properly.

The behaviour that then ensues (often seeking some kind of sensory input) can be unhelpful to them, antisocial and more importantly, blocks them from learning and progressing to reach their potential. Speaking very basically, Sensory Occupational Therapy aims to improve the balance between the fight and flight part of the nervous system (the over excited/ shouty / whizzy part) and the rest and digest (calm, sleepy, slow) part and improve the way that sensory information is processed by the body.

I’m very interested in this personally (see below) and professionally.  I see so many children who aren’t fully at ease with their environments or functioning as well as they could: my osteopathic training has taught me to get to the cause of something and not just treat the symptoms.  I’ve always had a very keen interest in physiology and how bodies work and applying that to my clinical practice (I also have an Honours degree in Neurophysiology from Bristol and was a trainee Cardiac Perfusionist (running the heart lung machine during open heart surgery) at Barts Hospital in London. There really does seem to be a reason for everything and if you or your doctor doesn’t know what’s going on, there absolutely will be someone somewhere who does.

If your child has a label (like Down Syndrome for example), please don’t accept – ‘oh it’s because they have Down Syndrome, there’s nothing we can or would do about that, it’s just the way it is.’  I will write more about this in future posts but please be curious.  What’s actually going on and can you find someone to help you look at the bigger picture to see what the cause might be and if it’s something you can follow up / get help with…

I thought it might be helpful to some people to hear about Sensory Processing Disorder & our boy with Down Syndrome and our experiences with Sensory Integration Therapy).  It goes without saying that what is right for our child may not be right for yours but you may see some similarities or be intrigued enough (I hope) to look into it more. Our youngest son is almost 4 and has Down Syndrome and is mainly a very delightful and engaging little boy with a keen will to learn. He’s been finding a few things difficult, which have been slowing his progress. His main difficulties have been his shocking balance (would fall over an eyelash), speech difficulties, really not keen on the TV/noisy unfamiliar places, problems with some fine motor skills and going through various phases of throwing things.

3 sessions over 3 weeks and we’ve seen a stark improvement with our small:

3 weeks ago:
Very wobbly on his feet though he’s been walking for 18 months, needed lots of hand over hand help putting jigsaw pieces together and other fine motor activities, struggling to copy sounds accurately and was just starting to say 2-part words, would get frustrated with anything he was finding hard and want to stop, we had to repeat instructions until he’d followed them. No sign of potty training.

3 weeks later (NOT a long time if you have Down Syndrome!):
Almost sturdy balance wise, puts jigsaws together easily and quickly (though we have to point out which piece goes where the majority of the time – larger puzzles), can do a brand new 6 piece unassisted, can handle mini figures well enough to enjoy playing with them, will attempt to copy 8 word sentences, starting to favour speech over makaton, far less frustration, more alert, staying with activities for longer, staying with tasks he finds difficult until it’s completed and eating more quickly, following complicated instructions first time. Potty training news: mostly dry (today, maybe too early to report!)

So what have we been doing?  Well, whether it be while we’re doing one to one play or just going about our day, very simply…

When he’s feeling over-stimulated (over excited, antisocial behaviour, frustration, unable to perform simple tasks, not concentrating etc): we calm him down and then engage him in a task:

We sit him on our lap and squeeze his shoulders, arms, hands, body, legs & feet
Sit in a row row row your boat position and ask him to pull back against us x 10
Calm rolling movements (sitting on our lap and roll him to the left and the right – or on a gym ball)
Ask him to push against a wall to the count of 10

When he’s feeling under-stimulated (can’t get sounds/ words out, falling over / wobbly, fumbling with motor tasks, day dreaming): we stimulate him and then redo the same task he was having trouble with or a similar task.

Bounce him x 5-10 time on a gym ball
Do a crawling race with him
Help him do x 10 jumps
Use an electronic toothbrush around and in his mouth, blow through whistles, drink of fizzy water, chew on dried fruit etc (if about to do speech tasks)
Use a portable vibration pad (e.g. lower back massage pad)
Deep pressure on hands / clapping, high fives, stimulate his palms with a hairbrush prior to fine motor tasks

This all seems too simple and too good to be true but actually it really does seem to be working and we haven’t been able to do it 100% of the time at all.

The theory is that over time he will learn to self regulate, integrate more appropriately and his tolerance levels will become more reasonable.  His nervous system will reset.  It will affect all of him and as a result, there will be improvements in all areas.  Us humans aren’t built in different sections, we’re whole beings where everything is linked to everything else.  Our SOT describes it as a sensory fog that we need to lift so our boy can do what he’s actually capable of.

I’m impressed so far!

A fabulous book to read on Sensory Processing Disorder is The Out Of Sync Child by Carol Stock Kranowitz

This post on Sensory Processing Disorder & Our Boy With Down Syndrome is the 1st in the series of our journey with Sensory Integration Therapy and I hope it can help others in some way. You find find the others in the series here:

Sensory Processing Disorder: Sensation Seeking & ‘Antisocial Behaviour’
Sensory Processing Disorder: Sensation Avoidance
Sensory Processing Disorder: Therapeutic Listening – a guest post by Carole
Visual Overload: The Power of Puzzles. A guest post that I wrote for World Down Syndrome Day over on Downs Side Up.
Potty Training A Child With Zero Interest.

 

Do also have a look at:
The Sickly Child
Encouraging Your Child With Down Syndrome to Crawl

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18 comments

  • Rachel
    October 2, 2018 AT 10:33 PM

    Thank you so much for your informative post which I came across whilst searching for an OT who specialises with Sendory Integration. Since I also live in London I’m wondering what f you might know an OT who could help us put a programme in place for our 6yr old who has just been diagnosed with severe sensory processing disorder (which u you know everyone thought was Autism & ADHD!)

  • Swaino
    September 8, 2017 AT 6:02 AM

    Thanks for this post, I am trying to find ways to just do everyday things with my son, 7yo with DS. Its quite frustrating at times, shopping especially, even though his big brother (11yo) and I love the markets, the 7yo behaviour rules us.
    I know this is not fair on his big brother, plus I am sick of it and stressed out as every attempt to go somewhere turns pear shaped. He can get out of the stroller but wont sit in it anyway if he doesn’t have a phone with youtube on it. I hate this solution, but at the moment its the only way his brother and I can have some peace and no stress for a little while. Same goes for following instructions when outside especially (like STOP!) Any suggestions? Most appreciated.

    • Elfie
      September 8, 2017 AT 10:59 AM

      Hi Toni – that does sound very hard, and I totally understand about needing a break too. Our boy’s behaviour is very much better if he’s interested and stimulated and if he’s outside pottering about in the park or the woods. But then again, over stimulation can result in poor behaviour too. Would a park trip before a shopping trip help? Physical exercise is a game changer for us. Can you son walk? Does he need to be in the stroller? Could he be on reins so he doesn’t dart off but so he can look and explore everything with you too perhaps?

  • al ferguson
    May 5, 2015 AT 1:24 PM

    I have read this before but it was great to have a re-read. Thanks for linking it up to #bigfatlinky

    • International Elf Service
      May 5, 2015 AT 10:26 PM

      Thanks Al x

  • Pinkoddy
    March 22, 2015 AT 9:52 PM

    What a great post a fantastic resource for parents. I am hearing more and more that children who have Down’s Syndrome also have Sensory Processing Disorder. I think that you are doing a great job – awareness is key.

    • International Elf Service
      March 22, 2015 AT 9:55 PM

      Thank you so much for reading this. I am hearing more and more about it with typical children too. I wonder where it’s all coming from? I’d love to hear about things that have worked for others too. Emily x

  • al
    March 2, 2015 AT 9:35 AM

    I am so glad that you linked up and that I got to read this post. So informative and useful on so many levels. I am glad you are impressed with the effects so far. Thanks for linking up #bigfatlinky

    • International Elf Service
      March 2, 2015 AT 2:09 PM

      There’s so much talent and knowledge out there – it’s just a question of hearing about it and giving things a try. Thank you for your lovely comment x #bigfatlinky

  • Sensory Occupational Therapy for Sensory Processing Disorder - Special Needs Jungle
    February 13, 2015 AT 5:51 AM

    […] As she points out, this intervention would not suit all children, but if your child is displaying some of the same symptoms, it might be worth investigating. Please welcome her to Special Needs Jungle where we thank her for this informative and useful post. You can read more about her son's journey over on her blog Sensory Processing Disorder and Our Boy with Down's Syndrome. […]

    • International Elf Service
      February 13, 2015 AT 9:19 AM

      Thank you so much for having me and I hope others may find this interesting and helpful too.

  • Nikki Flynn
    February 7, 2015 AT 8:05 AM

    Great piece as ever, Emily! Darragh doesn’t seem to have too many sensory issues but I have noticed that bouncing on the gym ball or doing something physically really improves his concentration and fine motor skills. Any useful tips on behaviour/discipline?

    • International Elf Service
      February 7, 2015 AT 8:37 AM

      Hi Nikki! Thank you that’s really kind of you. There’s a strong case for all primary school children taking movement breaks far more frequently than they do! I did another post, which again is just what we do, called Disciplining Kids. Have a lovely weekend! Emily x

  • International Elf Service
    January 31, 2015 AT 10:14 AM

    Thanks Vicki – I appeared to have added an extra piece of code somehow! Corrected, thanks for pointing it out!

  • HonestMum
    January 31, 2015 AT 9:30 AM

    Such a useful post to so many, and all us mums-my kids get so overexcited and I need to help support them in relaxing. By the way you need to add the code in HTML mode so it appears as a badge. Thanks lovely for linking up x

  • Downs Side Up
    January 29, 2015 AT 11:18 AM

    FAB, informative and extremely useful post! Thank you so much for sharing. Hayley #SENDBritmums

    • International Elf Service
      January 29, 2015 AT 11:42 AM

      Thank you so much Hayley – that’s lovely to hear! x

      • JP Deckert
        December 9, 2016 AT 6:15 PM

        Hello! My name is J.P. Deckert and I am with the Down Syndrome Guild of Greater Kansas City. We loved the article and were wondering if we could have permission to use it in our newsletter. We would definitely give credit to you in our newsletter for the article if you are willing to let us use it. Thanks for considering!

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