Spectacular Sensory Seeking Stims and a little moan!!!

Lets talk Stimming and all things sensory related.

The good stuff first!

Joe speaking"....

My favourite stims are bloody amazing. I'm sorry for swearing, but they are bloody freaking amazing. My Mum says I can use those words because thats how I feel about it.

My Mum asked about the different ones I've had over the years. There's a lot Mum I said!!

Some of them I never knew they were my stims because no one told me I guess. Now I do know.

-Singing in different languages

-Writting in different languages for hours and hours. My neck and fingers gets achy sometimes.

I really need my note pad and black pen because this helps me. My Mum has to buy me loads of paper and pens!!

when I leave the house I take these with me every where.

Singing when I'm walking down the street or in a shop or any where really.

Dancing. I used to love MJ, The greatest Showman, The lion King and all the spin offs, Frozen 1 and 2. I knew every song, single, album and costume. Mums got loads of videos of me on her Galaxy phone.

Pulling my fingers

I like my mum to squeeze me really hard.

I like my mum to massage my back at bedtime

I like my Mum to scratch my head at bedtime

I have to scratch the wall even though it feels horrid.

I love my Lego Chews

I've probably forgot some

Walking up and down when I'm talking

At my old school they would tell me off sometimes or send me outside to socialise. It would make me very cross and sad and I felt like they didnt understand a wonderful autistic boy like me.

Thats all I can say at the moment.

Auf Wiedersehent, Goodbye, adiós, au revoir, arrivederci, do widzenia,!!

Back to Jenny I'm afraid

Stimming, sensory seeking and sensory avoiding, is as important as breathing in our house and can make the difference between a bloody awful day and a bloody brilliant day and anything in between.

All of the above may seem insignificant however Joe has very cleverly found a way to help with regulation and to limit or prevent him from doing these would only result in complete over load, meltdown, burn out and would make him feel really poorly.

If you ask Joe to look at you when hes talking, he will do this as he wants to please others but he wont have listened to what you've told him. If you ask him to stop singing he will only have to sing louder and for a little while longer later on or feel totally burnt out.

If you ask him to sit still or stop fiddling he will then stop processing and learning will cease.

So he will comply to the instructions but for your benifit and not his.

I wanted to blog about this subject as there seems to be very little knowledge in my area in terms of how crucial stimming is to a child/young person/adult and how as a family stimming and sensory seeking and avoiding, influences how we all function and live under the same roof.

The image on the right is taken from Kaiko Fidgets - sensory tools that are discreet, noiseless & robust

That being said Sensory integrated trained occupational therapists under the NHS are extremely rare across the country. Which means if you a neurodivergent person with sensory difference/experinces or newly diagnosed then there may be a mahoosive part of your identity that remains unexplored in terms of your individual sensory experiences.

When Joe received his Diagnosis three years ago. We received a very pathologizing leaflet and not a word on sensory difference/experince, Stims, not a mention, no additional referral to a sensory integrated OT.

I compare this to diagnosing a person will a physical difference which prevents said person from walking but then not providing that person with aids they need to live a full life. In my mind, the person isnt disabled by their difference but by other external factors that prevents them living independently.

In other words by not suggesting in our case, an autistic person a sensory integrated trained occupational therapy assessment which may help validation, empowerment helping said person identify/sense of self, will also impact on lack of proffessional knowledge needed to ensure support is provided in terms of sensory experience. To not provide this is similar to not providing a person with a wheelchair, walking stick, ramp ect....

Just because you cant see when a person is struggling, (masking is a perfect example) does not mean that their sensory experinces are not valid and just as much debilitating if they are not validated and acknowledged.

Is this a problem?

Here, I share some of the language that is NOT neurodivergent affirming for us.

Sit still!!

Stop fidgeting!!

Good looking!!

Good sitting!!

Stop making that silly noise""

You dont need to fiddle with that do you ?

We dont do that do we?

We dont make noises like that do we?

Thats not how we behave do we?

Do you see others doing that?

Make good choices!

Look at me when I'm talking to you!

I dont like your tone of voice!

You dont need to use that anymore do you?

When we talk about success. It is usually based on neurotypical values and expectations underpinned by neuronormative values. This is often counter productive for neurodivergents and their values/culture.

Success shouldn't be based on changing a persons identity/culture.

Outcomes shouldn't be about changing a persons identity/culture.

Quite hands!

Quite voice!

Nice sitting!

ARRRRRRRH!!!!

To quote Autistic Scholar Nick Walker. "If we know better we do better. "Also see neuroqueer.com.

Talking with my proffessional hat on now....

Part of a proffessionals role is to evidence "progress" by documenting" in some cases "observed behaviour" followed with an "outcome" which states what the proffessional must do to help child make "progress".

Points to consider

What motivates the proffessional to write an outcome, what is their proffessional knowledge/experience and perspective of neurodivergence?

Is the outcome target led, preformance led, progress led and what does progress look like to said proffessional and what part of the outcome is led by the child /young person? Do they understand it, do they agree with it?

Who feels the benifit when the outcomes have been met as per the paper work requires . This is usually how proffessional/ service/schools are measured.

What skills are being learnt/taught?

In my experience, outcomes may have been met but this does not mean that the child is making actual progress which is meaningful to them.

Could it mean that the child is being trained to conform and being trained without the proffessional realising to mask and underneath all of this "progress" and compliance trauma may be building.

I have had so many conversations with proffessionals who use narrative such as

Disruptive behaviour

Manipulative behaviour

Cannot control emotions

Unpredictable behaviour

Impulsive behaviour

I cant get him to sit still

refuses to engage

Challenging behaviour

Will not comply.

Again, In most cases the above narrative is used due to a misunderstanding of need and confusing the above with a child choosing to present a certain way. When in actual fact there is no choice. The child is trying to communicate his needs to you in the only way they know how.

Can we please make the shift from everything being about "behaviour" and start to really understand how sensory overload can impact how a child physically and emotionally feels from moment to moment.

Could this be why so many children are out of school at the movement and why exclusions of pupils are on the up?

Penalising a child for "disruptive behaviour" by excluding them is counter productive. As all the child is really learning from that lesson is that they are misunderstood. Their sensory experiences are not just going to disappear when they return to school.

Progress for the adult may not be progress for the child.

In my next blog I will be discussing out dated pathologizing narratives used in paper work and the negative impact this has on sense of self

In my experience, most people working with children go into the profession with the best of intentions. The problem is the lack of neurodivergent led education and training on the neurodivergent experince, including sensory experiences.

Unfortunately there is such a massive focus on changing neurodivergent people, Stims and sensory experiences are seen as an annoyance and seen as a behaviour that needs to be changed.

We need a complete shift in mind set, language and approach and this includes developing a framework around neurodivergent experiences within the national curriculam written by the neurodivergent and other cohorts of people with any other differences which dont align with the neuronormative ideology.

Children grow into adults and Employers. As a neurodivergent person myself I come from a place of lived experience and would therefore consider and implement/adapt the working environment which enables me and any other person I'm working to be able to be myself at work that perhaps a neurotypical person may not consider due to lack of lived experience in neurodivergence.(The state of being neurodivergent)

Hence why Sensory integrated Occupational therapists are absolutely vital and should be funded through the NHS to embed knowledge into the wider society and workforce. We are all sensory being anyway. Early identification for neurodivergent people will support a strong sense of culture and identity and reduce the need for people to mask causing long term trauma which may have long term financial consequences when seeking employment ect......

Think for one moment being hauled into your employers office ....

We dont do that here!!

Weve noticed your fidgeting a lot at your desk and its disrupting the other Employees!!

Look at me when I'm talking to you

I dont like your tone of voice.

Ect.ect....

My point is. I always get there in the end, I promise!

Please dont stop humans from stimming. This is an integral to being able to function in difficult environments. But to also say Just because Joe is stimming doesnt mean hes struggling it can also mean hes having a wonderful time too.

Also, lets make environments sensory pleasing for all humans and do away with "sensory rooms" as this kind of implies that we cease to be sensory led as soon as we step out of them. Which is not a thing and also implies that we can only have our sensory needs met when we have allocated time in a "sensory room"

If you want to know more about sensory process and the central nervous sytem from a specialist then below Katie Kerley explains more.

The below content is credited to Neuro Pride Ireland and sourced directly from youtube.com SUBSCRIBE

"Here, https://youtu.be/v-YKwfNFNEQ Katie takes an in-depth look at what sensory processing involves and how it can differ between neurotypical and neurodivergent people. She also looks at how sensory processing differences underlie various other aspects of the neurodivergent experience, such as interoception, stimming, shutdowns and meltdowns (which are explored in more detail in other videos on this channel). About Katie: Katie Kerley graduated as an Occupational Therapist from Trinity in 2008, and in 2011 received a post-grad certificate in Sensory Integration from the University of Southern California.

Since then, she has continued to receive professional qualifications on this topic due to both personal and professional interest. Katie is also t We love getting to be part of supporting teens and adults with their sensory needs as most don’t cater specifically for tween up! Kai, co founder and 15 year old proudly autistic creator of many of our metal fidgets loves being able to support others, who like him rely on sensory supports but want something cool and age appropriate. he Clinical Director of Horizons Therapy": https://www.horizonstherapy.ie/

For cool fidgets to purchase and sensory related content go to

Kaiko Fidgets - sensory tools that are discreet, noiseless & robust

"Meet the mum of Kaiko Fidgets. As the mother of Kai, who is autistic and dyslexic with high-anxiety, Joanne helped Kai design, create, and market these sensory aids known as ‘fidgets’.

Joanne, with over 20 years of experience as a stallholder with Crafts Markets Australia, gives us some insight on how they began their family business, their highlights (and lowlights), and her dreams for the future"!

"We love getting to be part of supporting teens and adults with their sensory needs as most don’t cater specifically for tween up! Kai, co founder and 15 year old proudly autistic creator of many of our metal fidgets loves being able to support others, who like him rely on sensory supports but want something cool and age appropriate".

Above content/photo and credit goes to Jo and Kai.

READ THE FULL STORY ON THEIR WEBSITE

Why have we chosen to use this brand in particular?

Jo and Kai come from a lived experience both professionally and personally so really understand their target audience. They have developed sustainable cool products which vary depending on sensory need. As my Joe is becoming older(14) his needs are changing in terms of how his sensory "toys" look. He doesnt want them to look like a sensory "toy," if that makes sense?

So I'm going to stop typing now before I go on too much.

I hope you have enjoyed our content and carry on stimming!!!

Love Jen and Joe.x