Supporting my son with sensory processing difficulties – a parents perspective
I am a mum to a wonderful boy who happens to have Down Syndrome. One of the issues that affects him most is having sensory processing difficulties. When my son was very little, I had an inkling we were going to face some challenges when it came to sensory experiences.
I started to notice that he would sit with plastic building bricks and just wave them in front of his eyes for ages, sometimes this would be a sign that he had had enough of engaging with people and it felt like it was his way of absenting himself from the environment. At this stage he couldn’t walk or talk, that didn’t come until he was much older (nearly 4) so I felt he was using what was available to him to escape what may have been a sensory overload.
As a mum, I felt it was my job to make sure he was constantly stimulated. I was very aware that I would need to put in extra ‘everything’ if he was going to stand any sort of chance of having similar life experiences to those of his ‘typically developing’ peers. I never really understood sensory processing disorder and after hours of trawling the internet, I discovered that bombarding him with stimulation probably wasn’t helping him in the way I’d initially hoped. So back to the drawing I went. As an SEN parent, I’m sure you can relate to this; pouring your heart and soul into something only to discover a little way down the line that you must have a complete rethink and start again with something new. Many parents of typically developing children tell me this is the same for them and I don’t doubt that for a second, but I rarely find those comparisons helpful or reassuring. Its true they have very good intentions and for that reason, I try not to challenge them very often but sometimes, I do have to say ‘its not the same, it’ll never be the same’.
As my son got older, our lives became smaller. I began to realise that he just could not tolerate so many day-to-day activities that people do with their children all the time. Believe me when I say I have travelled the length and breadth of this country, trying to access services to support my son at various stages of his development and he is nearly 7 now. I have been relentless in trying to figure out what is happening for him and how I can help him.
I thought it might help for me to write some kind of list of all the areas i can think of that are affected by sons’ sensory difficulties from morning until bed. I am often asked by well-intentioned professionals to describe how my son behaves and reacts to certain environmental situations so I decided to write a list. I have also been asked to ‘goal set’ for me and my son to enable professionals to understand how they need to tailor their interventions to meet my expected aims and objectives. Whilst this can be helpful to the professional, it often just becomes another thing to add to my list of things to do so again, I try and direct the professionals to the list of things my son struggles with and explain our goals sit somewhere between him not being able to experience any of these things, to tolerating them, to accepting them and in rare instances, I even dare to dream that he might enjoy them!
- washing face
- brushing teeth (I’ve tried every toothbrush on the market, including ‘collis curves’ that cost £15 a go) combing hair
- putting on clothes that might be a different colour, texture, new clothes
- can only wear the exact same shoes (1 pair a year provided by orthotics)
- can’t move from one task to the next without having 2 cars in his hands
- constantly waves the cars in front of his eyes and won’t put them down, gets upset when made to put them down
- will not engage in activities/games etc when he is holding the cars
- eats the exact same food every day, will not entertain anything else
- has to drink out of the same cup
- is not able to engage in activities that take place via zoom, facetime, etc – becomes distressed if he hears/sees people inside devices.
- was not able to engage in any online school work
- can not cope when i am talking on the phone, he will go into another room looking scared
- can not walk into school without trying to run off, gets distracted, can not focus, touches everything, absolutely zero impulse control and zero spatial /social distance awareness
- can not play on the beach due to sand/water – although he wants to, as soon as sand or water gets on his boots, he becomes very distressed,
- can not walk on grass in bear feet
- can not go in sand pits
- can not play with sand a water tables
- can not bear to get his hands wet and muddy could not sit in his OT provided chair at the kitchen table for 6 months because it was ‘different’
- can not manage any adults he sees regularly having different hair styles, wearing head gear, sunglasses etc
- can not play on regular play park equipment due to having to touch certain things, motion, waiting
- new toys and games can cause him concern
- we can not sing happy birthday or do the typical ‘happy birthday’ celebrations
- if people spontaneously sing/laugh/clap, he will shout at the top of his voice and become distressed constantly grinds his teeth
- can not go into theatres, cinemas, arenas of any description
- will not engage with new activities i.e. trike provided by OT, scooter, trampoline etc
- will watch the same programs and listen to the same songs on repeat until he moves on to his next favourite.
- I can not take my son in to shops because of the tannoys and music
- I can not take my son in to cinemas, theatres, sports centres, outdoor sports events (football clubs for children), play centres, restaurants, fast food places, parties, bouncy castles, on bikes.
So how do the Home Sensory team help us with these issues;
Issue
Homesensory support
Sensory avoidance
avoids things like sand, water, touching food, play dough, mud, grass.
Provide a range of sensory experiences with an understanding of my son’s limits, not pushing him too hard but exposing him in a safe, familiar, supportive environment to explore some of the things he avoids. They recognise when my son has had enough and give praise whenever he achieves even the smallest step forward. In addition to this, they advise and guide me to build on the positives.
Demand Avoidance
will not engage in everyday activities, sometimes for no apparent reason at all.
Delay in development of fine and gross motor skills
reluctance to try going on a scooter, trike, bike.
The sensory ‘SWITCH’ session involves building a relationship between the worker and my son. It promotes communication, either verbal or Makaton and my son is prompted to make requests. This means he is forced to communicate but, in a fun, relaxed setting with a high interest activity. My son is encouraged to use both sides of his body at the same time when using the Switch which improves his spatial awareness and helps him to know what his body is able to do. We hope this will lead to him developing more confidence when it comes to trying out these physical activities.
Lack of impulse control
will run off at every opportunity which is a huge safety issue for us.
During the sessions, my son must take part in simple turn taking, waiting, requesting and responding when he is asked to stop. The hope is that because this happens during a high interest activity, he does not feel the ‘demand’ as much and therefor this will positively impact his ability to develop his impulse control.
If this sounds familiar to you, I can highly recommend trying the SWITCH sessions. We can’t wait to try out the ‘SKOOG’ music next. I’ll keep you updated about how we get on.
Contact us to register your interest.
- 1 The Hollies, Hornsea, HU18 1TW