3 December 2016

My Daughter & Sensory Processing Disorder

A couple of weeks ago i wrote a post on SPD (Sensory Processing Disorder) called Confused About Sensory Processing Disorder explaining all of the different terms, how it can affect people and some examples of how this may be displayed in a child. It was quite factual and today I'm writing about how SPD affects my daughter personally and how we help her with it.  

When I first heard about SPD, i was at an appointment with her for what i assumed was an assessment of her Hyper-mobility, we had been referred to the Occupational Therapist because of regular falls and bumps and bruising. I had no idea that we would be walking away with another diagnosis, a full action plan and an invitation to a course run by the Occupational Health Therapists at the Hospital. We adapted our home accordingly, incorporating lots of different sensory lights into her bedroom, including a bubble lamp, which was a very big hit, it created white noise, and a rainbow of different colours which enabled her to calm her senses enough for an improved bedtime routine. We had numerous different peanut balls for physio exercises which included heavy resistant input for proprioception.

The appointment was very insightful, and very long. 
We were there for about 1.5 hours in total, and i had to fill out a checklist questionnaire which would be used to form part of her sensory profile. As i filled out the form i realised i was ticking all of the strongly agree boxes and it occurred to me just how much this affected her on a daily basis. Whilst i was doing this, the Occupational Health Therapist was doing some drawing, writing and fine motor skills exercises with her, This is designed to measure attention, concentration, Fine motor skills, like holding a pen, or threading beads onto shoe laces. 

As she was asked to do things, all she could concentrate on was the noises going on around her, for example, there was an ambulance in the distance and she heard it way before we had even noticed. You see people who don't suffer so much or at all with SPD, our bodies and minds automatically shut off any unwanted or irrelevant noises. The disorder affected her so much that she couldn't concentrate at all until we had answered her many questions about the ambulance;
"Where was it going"

"Who is in it"

"Are they poorly"

"Will they die"
These questions were an everyday occurrence for her and even after she had asked them all she still wasn't completely satisfied. She couldn't filter any unwanted sensory stimuli correctly and so it took her time to process it and manage it correctly. 

As i mentioned in my last Sensory Processing Disorder post there are lots of different ways that this can affect a person. Some of the senses include, taste, smell, sound, the vestibular system (How your body feels in space) and proprioception (how much force you need to use to carry out certain tasks) and Tactile, which focuses mainly on the sense of pressure, traction, and touch. How certain things fee against your skin.

A person with Sensory Processing Difficulties can be affected by just one, a combination of or ALL of the above. 

It can affect you in different ways, a person can be under - responsive, or over - responsive. People who are Under responsive are said to be seekers, and if you're over - responsive then you will avoid that particular input. This is where SPD can become quite confusing to the outside world or to a person with little understand of their own, or someone else's sensory needs, because there isn't just a "one size fits all" sensory profile. Like my daughter, who is very complex, and very confusing at times, you can also be an avoider AND and a seeker for the exact same input at different times. And these times can be literally 30 seconds apart.

For Example, One day she can absolutely love to have a bath, washing her own hair, running her head under the hot tap. The feel of water and bubbles on her skin. soaping her whole body and lastly smothering herself in shaving foam. She is seeking this input. It makes her feel calm, and the more she does it the more is able to tolerate other things such as, after the bath, when i brush her hair whilst she's enjoying an episode of Holby City on the I Pad, and plaiting it ready for school the next day.  

Other times, in moments or phases of high anxiety she will completely avoid this input. Stresses to me how much she hates the bath, and the water on her skin, shouting no to brushing her hair and the more i try the more she avoids. She doesn't want to take her clothes off, she certainly doesn't want to get wet, and hair brushing? nope not a single chance in hell.

After reading the report and accompanying sensory profile that was created by the OT, suggestions were made for things to buy her to help her cope in situations of potential sensory overload.

We soon picked up on situations that were creating stress and sensory overloads which resulted in poor behaviour, that almost always lead to outbursts, Meltdowns and even extreme lack of awareness for danger caused by trying to avoid certain sensory stimuli. 

She was the child who always took dangerous risks.

Wanting to jump from very high places, not understanding the danger of it being way too high for her little body to withstand - There was this one instance that was described to me by a very experienced teacher who came to her school as a consultant head teacher and she stated that the first time she met her she was walking through the P.E hall and L was unaccompanied, and had climbed to the very top of the gymnastics bars and was about to jump off. The very real reality of a situation like this is frightening, When she is in the classroom and expected to sit for any period of time and concentrate, taking part in the lessons which were so complicated for her she is building up lots of excess energy that needs to be released. When she releases this she needs lots of heavy resistance exercises, to help her calm her senses, like playing catch with really big balls, or stretching some super elastic material. Some kind of input that she has to work her body hard for, if these exercises are given appropriately and correctly then just 15 minutes of these exercises can help a child continue to concentrate for up to 2.5 hours.
A child seeking this sort of in-put may be described as liking "rough and tumble" play or quite active.

The morning routine was fraught, she would be expected to dress, and wash and have her hair brushed which caused her to scream in pain most mornings, the feel of the seams of her socks over toes, and the tags in her trousers felt like they were ripping through her skin. Her head has always been and most probably always will be the most painful for her and most mornings i wouldn't even brush her hair, i would just pull it back in a messy ponytail. Her mental well being more important to me than her appearance.

Here's what we learnt that  made her anxious and uncomfortable, and gave her a negative sensory feedback.

Her socks had to be carefully placed on her feet or she would scream violently and uncontrollably.

Her trouser length had to be just right and she would repeatedly check this in different ways - whilst standing and whilst walking.
Her trouser waist had to be so tight it looked like it was digging in. (She preferred old trousers for this reason and i struggled with transitioning her into the new terms uniform.)
She would scream in agony when brushing her hair, but she would hate the feel of her long hair down in her face or on her neck. I couldn't blow dry her hair for this reason.
She couldn't have her t - shirts tucked in. 
She wouldn't entertain the idea of any tops or bottoms that weren't full length or t - shirts (No leggings, or 3/4 length items at all)

As a toddler she was consistently throwing off her clothes, when public places became too much for her, to try and relieve some built up tension she would try and strip her clothes off, again as soon as she arrived home from nursery she would immediately undress, mainly walking around naked, and then advancing into finding alternative comfortable clothes (she lived in tracksuits and PJ's) 

Lots of people can have sensory difficulties, as i touched upon in my last post, i struggle with some noises, like chairs scraping, and touching paper makes me cringe, but it only becomes a disorder when you suffer with lots of sensory issues and it is so bad as to interfere with everyday lives, such as avoiding things that you have to do in general because of a sensory issue. 

Saying that, using sensory techniques can be helpful for everyone, and even dare i say it the "normal" child. Classrooms can be quite overwhelming for any child. Whether they have any recognized disabilities or not. All children would benefit with some kind of sensory in put and i think that every child in every classroom in every school should have access to a sensory area, or a basket filled with sensory aids. Not only would it break up the day for the little children of 5 years old who are chucking in at deep end from a play based reception free flow classroom, it would be fun, create initiative to get their work done and would be inclusive for all children. Especially for those that have slipped under the radar because either they are deemed a "naughty child" or they simply have the ability to bottle everything up and release as soon as mum/dad picks them up. Schools really need to realise that this is a serious issue that is so avoidably common. You may think that 'This is what breaks and lunchtimes are for?' and actually no it isn't! You can incorporate sensory techniques into every day classes so that they become leaning exercises without the child even realising.

Some sensory tasks can improve hand eye co-ordination, Fine motor skills, mathematics, social skills, an ability to understand ones own emotions ans sensory needs and more. Being creative, inclusive and fun is whats needed in these classrooms.

Think about the child that constantly twirling her hair or tapping his pencil on the table?

Give him/her a fidget toy for 10 miniutes so that they can concentrate on listening to the next task.

Think about that child who keeps kicking under the table, getting his feet in a tangle.

He needs an elastic band that stretches round the foot of the chair so he can stretch properly.

Do you often see those same one or two pupils who fidget uncomfortably on the carpet at story time, or on their chair during guided reading?

They need wobble cushions. 

All of these gadgets and techniques can provide the necessary feedback that a child/adult needs to be able to attend appropriately during classroom work and activities. They may only be small things, simple diversions, or techniques that can actually work wonders and become an all inclusive tool for mass learning.

I asked for a few quote from people who have children with extra needs and Miriam Gwynne from Faith Mummy has described her twins, a boy and a girl who both have complex needs and disabilities, perfectly for people who have a child that avoids and seeks. Here is what she has said:

"I have a seeker and an avoider. Sensory processing difficulties to me is, accepting loss of personal space whilst accepting their own personal space, squeezing them tight when needed but being aware the slightest touch also can feel like cutting them with a knife. It is cutting labels off clothing, searching for non itchy trousers, keeping the lights on dim yet allowing them to switch them on and off at will. It is hearing the same noise over and over whilst also providing them with headphones in public. It is having them seen as rude or in your face when others don't understand. It is having a tiny list of food they will eat yet knowing mud and cardboard are eaten regularly.

It is hard to watch, hard to make sense of at times and can vary in intensity depending on mood and tiredness. Sensory processing difficulties make my child complex yet unique, challenging but charming, and makes me realise how different we all are."

Vaila Morrision who is also a fellow SEND blogger at The Inclusive Home said that her daughter suffers with SPD to such an extent that it has had an significant impact on her development.

EJ has extreme sensory processing disorder (if that's a thing?).
We think her sensory processing is the key to her overall developmental delay (around 18 months cognition at 6 years old), in that she has CVI, auditory processing issues, tactile issues (this is much improved), loves all vestibular stimulating activities (swinging, spinning, bouncing etc!)! Her sensory processing issues also extend to processing of pain, which is our biggest challenge, and worry, as we don't always know when she's poorly or hurt, as there is either a delay in her reaction or no reaction at all!

So you can see that from other peoples experiences each child has very different experiences and can be affected by this disorder in completely different ways. However although some children display differently there lots of samey techniques you can use to help each child regardless of severity, or differences.

Please come again as really have too much to say about Sensory Processing Disorder and i already have another post ready to publish! Ill see you same time next week for more on my take of this part of my childs profile.

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  1. Another fantastic post :) This is so good for spreading awareness of SPD, before Amber was diagnosed I'd only come across SPD once after teaching in schools for 12 years. How similar your gorgeous girl is to my Amber :) x

    1. Anonymous4/12/16 10:08

      Thank you nicki, i hope that people find it interesting. xx your feedback is much appreciated

  2. Thank you for your post, my son with autism was under stimulated and now seems over stimulated, which confused me. Now I know that it's possible to be over and under stimulated at the same time.

  3. Thankyou for posting this. My son seems to go under and over stimulated
    , at least i know thats possible as other kids go through this as well.x