"He changed in lockdown. He no longer wanted cuddles at bedtime"
Louise Pendry writes about discovering her son was autistic, the ways he was let down by healthcare professionals, the therapists who changed everything and why she came to despise 'attention buckets’
My son Jack was diagnosed as autistic last year, when he was four years old.
Prior to this, we’d been on a bit of a rollercoaster, as a family. He’d been recovering from two bouts of pneumonia as we went into lockdown.
One had seen him in hospital and on oxygen, so it felt like we were just settling back into a new normal as the pandemic hit.
He changed in lockdown. He no longer wanted cuddles at bedtime. He never seemed interested in things outside on our hourly walks.
Maternally, I could beat myself up thinking that I should have known something else was up, but life was so strange for everyone. We did the best we could.
We were referred by our nursery to the doctors, as Jack was missing language milestones at his two-year check - and were put on the emerging needs pathway.
The paediatrician said we’d probably find out he was autistic. But it was another two years of waiting to confirm it.
This was quite a hard and lonely period.
Jack had a lot of issues with his guts.
His bowels were all over the place, but I found it very hard to advocate for help with this, because we were already on a journey towards an autism diagnosis.
One doctor wrote to the GP saying that he had advised me to keep an open mind, because he was probably autistic.
All I’d said was that I thought his guts should be sorted.
A gastro doctor said it was common in ASD children and discharged us. The neurodevelopment paediatrician said it wasn’t her area and to go back to the GP.
I found it very hard to accept that his lived experience should be ‘pain’, while we waited for an autism label to be given to him.
In a new nursery, they thought he was going into the corner and making strange noises because he had undiagnosed additional needs.
Later, it transpired that he was so chronically constipated he was managing his pain. He just couldn’t tell anyone.
It was a painful couple of years to try to navigate but in some respects, it did me good, because it made me start to question everything.
I eventually found out he had malabsorption syndrome.
After we managed to get the right help, Jack one day just took his nappy off and started going to the toilet.
He never let me put it back on again and went on to fully toilet train himself.
As I continued to read and learn, there were lots of things I found myself disagreeing with in terms of the support we were offered.
The Attention Bucket
However, one thing that really would push my buttons was the ‘Attention Bucket’.
The Attention Bucket is an intervention to build communication at different levels.
For Jack, it meant a therapist would show a bucket, sing "What's in my bucket" to gain his intention and invite him to come and look at a toy.
Every report from our new nursery would include a note about how he could attend for two-four minutes at the bucket.
He was also described as “disinterested” or “in his own little world”.
Every therapy session I went to, another therapist would get out a bucket and wait to see if Jack would sit with them.
In a group session, the children were not even allowed to touch the toys.
I remember sitting on the side of the room whilst one therapist sat in the middle with her bucket. Jack was trying to climb the chairs.
It all seemed wrong.
I couldn’t stand the idea of judging Jack by his ability to sit at a bucket when he wanted to climb the chairs.
I also could not stand the fact that Jack was carrying the burden of responsibility to be successful in an activity completely chosen by the adult.
Things were getting harder at nursery and for lots of reasons, I reached a tipping point and needed more help.
I found Vicky Robinson, a sensory OT (occupational therapist) on Instagram by complete chance, a year ago. I signed up to work with her.
She has - and continues to - change our lives.
She did a sensory assessment, and it turned out that Jack had a low sensory register.
This means he wasn't noticing or registering sensory input to wake up his brain.
And in the two years we were on the emerging needs pathway, no one ever mentioned sensory processing to us.
So, it transpired that in many ways, the Attention Bucket was the exact opposite of what Jack needed at that time.
He needed sensory experiences in order to process sensory input better and make sense of the world around him.
Yet, he was being judged on his ability to sit and attend; to be compliant, perhaps.
He was judged to be disinterested, when actually his brain needed to be woken up.
He didn’t know that it did, and no one was helping him – so he was left to fall into his own little world.
One of the many things Vicky had us do was a sensory bin.
Toys that could have been in a bucket were now hidden in rice.
Suddenly, Jack could sit for 40 minutes or more, each day, exploring small objects with his fingers, letting me sit beside him and eventually join in.
Vicky introduced me to a speech and language therapist, Joanne Jones, creator of the Can-Do Speech Therapy programme, as they work together.
We switched to work with both of them and we have never looked back.
Joanne has never met Jack in person and she is the only speech therapist to correctly diagnose him with a tongue-tie that was limiting the speech sounds he was making.
She gave me all the research, assessments and information for a referral.
I had an unpleasant conversation with another ENT (ear, nose and throat specialist) who concluded we were wasting our time, and he didn’t speak because he was autistic.
I would have given up at that point. However, with Joanne’s encouragement and evidence-based research, I went for a second opinion.
I found a neuro-affirming dentist. She diagnosed he had nerve damage and erosion from reflux and a tongue that could move but was tight enough to tire out.
She was so kind to us, I cried. It made me appreciate how little kindness there has been in trying to advocate for Jack’s other health needs.
Jack had a little operation this year to fix his damaged teeth and laser the tongue-tie. Since then, he has started to babble, move his jaw and stick his tongue out.
I watched him lick a nectarine the other day and nearly cried, as I realised he might have gone his whole life never experiencing the joy of licking fruit or lollies, because of assumptions connected with the ASD label.
Vicky and Joanne’s approach is very different and feels a bit scary to start with.
Especially when you stop going to weekly therapy sessions and instead submit videos of everyday life.
At first, it feels like you’re giving up on therapy and the pressure is on you to be a therapist.
We have virtual sessions and WhatsApp support to problem-solve, develop and celebrate experiences in Jack’s everyday life.
In doing so, we have started to appreciate everyday life and all the tiny changes that show how Jack is flourishing - or unfurling, as Joanne calls it.
We no longer talk about targets Jack is not meeting.
We talk about what he can do, what he wants to do and how we can support him to do more of it, so he can develop at his own pace into the person he’s meant to be.
One year into working with Vicky and Joanne, I no longer have a little boy in his own little world.
I have a cannon ball who can get dressed himself, is climbing everything, helping cook his own dinner in the air fryer, making requests for play, chasing his brother, babbling with new sounds, laughing, requesting cuddles and starting to take in the world around him.
When I look to the future now, I feel an optimism that I haven’t felt before.
Therapy has changed me, along with Jack.
When his ECHP was written, I tried to advocate that the Attention Bucket was not the correct provision for Jack.
They wrote back that it was a ‘motivating activity’ so would remain.
However, now I switch off from those things because the choice to not listen is not being made by me.
I am not the mother I was two years ago, who let herself become eaten up by the doctor’s assumptions about autism.
It was never my mind that was not open.
So, with the support of brilliant therapists, I have the confidence to advocate for Jack, because I understand what he needs.
The only buckets we need this summer are the ones for our holiday.
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