Cool Kids- Sam and Alex’s Story

Sam and Alex are identical twin boys. They lulled us into a false sense of security by being lovely easy babies. They came a little early but grew fast, ate well and slept like clockwork. Once you got used to doing everything twice we thought having twins was pretty easy really. It was easy to brush things off, like when they joined rugby tots and were the only ones doing their own thing, or how cuddles sometimes came with a bite on the shoulder!

They started school nursery aged almost 4 and I expected they would do well as they were clever, funny and bright boys. However. I was called in to their class one day and told they don’t seem to like joining in with others and prefer to wrestle each other on the carpet instead of sitting (as they wrestled on the carpet having a great time). The next meeting was a few weeks later in the headteacher’s office, with several members of staff and an A4 picture of a bitemark on someone else’s child. There was mention of autism and special schools almost straight away. It was a massive shock to us.

Then came many appointments and people coming to watch them in school and talk to us, reduced timetables that didn’t make them hate school any less, and numerous assessments of different types. They carried on being the terrors of the nursery. Kicking, hitting, biting and spitting, sent home early, always in the bottom of the behaviour board. No incentive or punishment worked for long. I varied between trying all the advice in parenting books, being in denial about autism, writing really good referrals for autism (took three goes over three years to get accepted) blaming my socially awkward self for avoiding baby groups like the plague and the usual mum guilt etc.

When the boys were in Reception we saw their consultant again. She said they are very sensory but our local NHS doesn’t treat sensory on its own, but it was a new lead, so I dove into the Out of Sync child and found out someone had written a book about my kids without meeting them. We got a private OT assessment and confirmed multiple sensory issues and recommended some aids (sorry Marion) which helped a bit, but they still had regular meltdowns at school despite now having 1:1 support from EHCPs.

We saw the private OT again but the suggestions didn’t help this time. The boys school has been incredibly supportive, but were still worried that they were letting the boys down and that they didn’t seem to be learning anything.

We got in touch with Sensory People around December 2021 after another behavioural incident and feeling at a loss of what to do sent me to google. At this point they boys had just turned 7. Alex could read, Sam was pretending he couldn’t read, and neither could write much more than their names if you could convince them to hold a pencil without drama. They were being brought out of class every day. I dressed them, brushed their teeth and hair for them (with drama) and they were often having angry outbursts over little things.

The first few sessions, I was pretty sure we were going to get kicked out for bad behaviour. But I’d seen Marion calm down Alex with a shoulder squeeze and getting him to stamp his feet and he was suddenly focused and back in the room (field), and that was like witnessing some witchcraft and I wanted some of that, so we kept coming twice a week despite much protesting from the boys, then later some doubts from school as the boys decided they would improve behaviour at home first school last.

It’s been a long journey and change almost crept up on us.

The boys have just finished year 3. Alex was unanimously voted onto the school council from his class. He writes giant pages of plans for the Roblox games he designs. Sam is the best in his class at the log trail and expert handler of stick insects. They both read at least one entire Diary of a Wimpy kid book a day. Sam writes nice notes for his favourite teacher.

They both passed their year 2 SATS and are pretty much where they need to be academically right now. I don’t dread the school pick up anymore as I don’t get a list of incidents. The only one who has a tantrum during the school run is me. They brush their own teeth, let me brush their amazing long hair (with no drama) and are calmer happier boys. They are well-liked at school by staff and pupils for their humour and quirky personalities which they can show off now they aren’t having meltdowns all the time.

Last week we went away on holiday to Blackpool and they managed a full five hours in the theme park. They went on rides that get their clothes wet (historically a wet spot on clothes would be a full screaming meltdown), they ate non-McDonalds chips, and did queues and lots of walking with zero tantrums. They want to go back every year. Their dad and I couldn’t believe how smoothly the entire week went.


Jeremy’s Story

As told by his mum, Susie.

I’m Susie, Jeremy’s mum.  This is my story about his early years and sensory journey.

The sleepless nights of a new-born baby can come as quite a shock to the system for any first-time mum but Jeremy’s sleeping pattern and his frequent meltdowns somehow seemed more stressful, more challenging and more tiring than what other mums were experiencing.  Even so, I didn’t know any different so assumed that this was the norm.

When I took him to baby groups,  he wouldn’t join in at all but just sat on my lap.  This was embarrassing for me as he’d just cry.  And when they did music sessions, he was overwhelmed by the sound and clearly wanted to get home.  Me too.  Sometimes he was so traumatized by the whole experience that I couldn’t get him into his car seat and had to get a friend to help.  More embarrassment  –  you look as though you are fighting with your child.

He also seemed to be struggling to cope with the general give and take, rough and tumble, enjoyed by the other children, so what was different about my little boy that he couldn’t manage this ? The prospect of the next stage, kindergarten was worrying.

We didn’t understand at that stage that he had specific sensory needs and this was really hard, especially for his grandma who he didn’t want to have any physical contact with.  Can you imagine how she must have felt ?  But it was the opposite with me  –   he was very clingy and spent a lot of his time in repetitive play which looked sort of unimaginative, such as laying out his toy train track all the time.  Other oddnesses were that  it took ages to toilet train him and for a long time, he ate with his fingers and was very fussy about what he would eat.

By the time he was five, he was like a ‘kid in the corner’.  If we tried to prise him out, sooner or later it would lead to a meltdown.  By this time, I felt I really needed help  but it was almost reassuring when his teacher told me that although he struggled in the classroom and the playgrounds, he was actually bright, even though he didn’t engage very well with her or his classmates.  She had also noticed that his attention span and his ability to do things were poor.  This was a tiny scrap of good news, but most of it was very worrying.  A visit to our GP, seeking help, lead to a whole string of referrals.  First of all there was an NHS Paediatrician, then loads of therapies  –  Occupational, Physio and Speech and Language, none of which really made any difference. 

At about this time when Jeremy was nearly six  I approached Marion, an Occupational Therapist and her colleague Janet who was a retired teacher, who were doing sessions every week in Jeremy’s school gym using an approach called Ayres Sensory Integration Therapy for children with problems a bit like Jeremy’s.  It was this that transformed all our lives.

Initially we had a discussion about Jeremy’s strengths and limitations and I read a book called the ‘Out of Sync Child’ (Carol Stock Cranowitz, 2005 Penguin Random House) that helped me to understand what it was all about.  Marion did various assessments which gave us an understanding of why he was struggling – the tests showed that he had Sensory Integration Dysfunction.  It seemed at last that somebody knew what was really wrong with Jeremy.

If you look at the photos you can see some of his difficulties. In the photo below you can see he looks a bit like a tin soldier, he had very mechanical movements.

In the photo to the left, there is a lady sitting on a scooter board which actually rolls quite easily. Most children would push her along but Jeremy didn’t want to touch her so tried to make the board move by pushing at its corner!

Jeremy had sessions for two years and at the end of that time he was presented with the following certificate: (TO BE ATTACHED)

After this when Jeremy had finished his weekly one-to-one sessions, we were given examples of activities that he could continue with in order  to maintain progress as he grew.

Great excitement!  We went canoeing and he went cycling as part of a group.  He joined the local football club and he now has five or six friends who live close by who knock on the door to ask him out to play football with them.  Occasionally he gets the odd thump or elbow in his face but it doesn’t seem to bother him.  He’s much more resilient now, even going out independently with his mates, sometimes to the West Bromwich Albion Stadium.  Occasionally he throws a wobbly but his brother notices and asks about it, which gets him back on the right track.  Mostly he’s pretty normal now.

I’ve stayed in touch with SENSORY PEOPLE, initially as a Board Member but am currently busy developing my own approach to teaching children the piano.  Jeremy is 11 now and it was really helpful when we had a few difficulties with his school work during lockdown, I was able to contact Marion. She reminded me that Jeremy literally needed to keep moving.  He’d got very absorbed with building computers which he was good at and really enjoyed but it meant that physical activity got neglected.  After a number of Cool Kids sessions with SENSORY PEOPLE Marion suggested that we ask a physiotherapist to help us identify exercises that would help to strengthen his upper limbs, which we did.  It’s so reassuring to know that SENSORY PEOPLE is there to help us if we hit a problem.

(Written in January 2022)