The New Normal

Today our cheeky, music mad wonder of a son Grayson turned five. Grayson has severe autism and a moderate learning difficulty.

Developmentally he is around eighteen months old and he has significant sensory processing difficulties. After initially starting school in a mainstream setting, Grayson now attends a special school.

Before launching into where we are now, I feel I need to go way back to our path to diagnosis despite being in a very different frame of mind now compared with back then.

To skip over the darkness of this period, this journey that was so very difficult would do a disservice, I feel to parents with newly diagnosed children, or with children who do not yet have a diagnosis.

In the near future, I will talk more about the wonderful after care that we have received, the way that time, knowledge and understanding of sensory needs can massively improve every day life and how getting the right education setting has been so key to improvements.

There is so much beauty and potential in our special little humans, there really is. But before I could see that, first there was denial, then painful acceptance and grief.

A New Bundle Of Joy

I discovered I was expecting again at Christmas time. I gift-wrapped the positive pregnancy test and sent Verona (our daughter, then two) running over to Jon with an early gift. He wept with happiness. It was such a special moment. Before Grayson was called Grayson, his first name in utero was ‘Little Sprout’.

When we found out Little Sprout was a boy, we were filled with hopes and dreams of all that our son would be, the fun we would have with him and the loving play we would witness between our two children.

I daydreamed as I stroked my growing belly about being a football mum, cheering on from the side of the pitch on early Saturday mornings, displaying sporting trophies in the home and going on bug hunts with my boy.

Jon, who is a huge retro gaming and sci-fi lover imagined sharing his passions with his only son, afternoons of multiplayer games and chewing the fat over who was the best Doctor.

Chalk and Cheese

Verona had been a very fussy baby. She cried a lot. She clung to us. She wanted to be held at all times. Verona hit milestones in advance and we marvelled every day at the clever little tricks she learned.

Before she turned two we were having the most remarkable little conversations with her, and now as a seven year old she is a clever, intriguing young lady who reads school books two years ahead of her age group.

In contrast, Grayson was an absolute angel of a baby. He only cried when hungry. He didn’t mind who held him. He wasn’t fazed in the slightest when I left the room and he didn’t eagerly follow us around with his eyes. He would quite happily lay there and just be.

With a lively and demanding two year old in the home we couldn’t believe our luck. We were too busy being grateful for such a content and well behaved baby to spot that something was amiss.

What we didn’t know then was that these were actually the early infant signs of autism. Grayson was exhibiting an impairment in communication and social interaction.

When babies cry and express seperation anxiety they are communicating with their parents, they are expressing their feelings and needs. Our son wasn’t communicating with us.

And Repeat

When Grayson starting eating solids the repetitive behaviour began to emerge and this became the first red flag that really went noticed.

Grayson would rock back and forth in the highchair. It would go on for long periods of time, it was like he was in a trance and his rocking was so forceful that we had to start stacking objects behind the highchair to prop it up and prevent it from tipping over.

What developed next was a constant, shrill shriek. It was like when you pick up a landline telephone and you hear that constant tone, only this was at a much higher pitch. He didn’t seem to break for air. This was the only form of any verbal communication.

Milestones such as sitting, crawling and walking were delayed and I’d tell myself that it was fine, he was a boy and boys just develop later than girls. Friends and health visitors would concur and reinforce the false sense of security that I’d built around myself like a blanket, blocking out what was reality, what was the fact of the matter.

Jon would voice his suspicions that something wasn’t quite right neurologically and I’d respond with anger and dismissiveness. I couldn’t hear it, I wasn’t ready. My boy could be nothing other than perfect.

Denial Was Not My Friend

By the time Grayson was mobile the obsessive repetitive behaviour continued and his big loves became water, switches and doors.

We tried so hard to engage him with preschool toys but he had zero interest, yet he could spend all day flicking a switch on and off, on and off and turning a door handle over and over again. Breaking him out of his little spell of repetition became extremely challenging.

In the bath Grayson would take two stacking cups, fill one with water and then pour from one cup to the other, over and over again. He would scream when it was time to come out.

Meltdowns started and seemed to be triggered by attempts to interrupt repetitive behaviour or transitions between activities.

Grayson walked on tiptoes, he’d drop to the ground at a moment’s notice and he would have to stop to run over every surface, every wall, window, hedge that we passed.

When grass changed to gravel that would be it, he’d have to be horizontal. Gravel would go into his mouth, his hands would be everywhere. He’d scream, plank his body and hit out when I tried to move him on. Firmly in denial, I would paint on a big smile and off we would go to toddler groups, park and soft play meet ups and lunches with the group of mums and tots I’d met.

I’d fill our week, determined that he would engage with these other children. Grayson’s differences became more and more apparent over time. Grayson’s peers interacted with Verona because they got something back from her. Grayson just engaged in his repetitive behaviour in an insular way, always on the periphery of social groups.

The First Intervention

Just after Grayson turned two, when his only words were “Dada” “Mama” and “Bye bye bye love”, the latter being a phrase that he’d repeat on a loop, the nursery SENCO sat me down and voiced concerns with Grayson’s lack of words and interest in age appropriate play.

I felt the dread rise up in my chest as she asked for permission to refer him to a speech therapist. There was no running away from it anymore. I had to face up and tell Jon, who had long since been campaigning for my acceptance that Grayson was different, that he might have special needs.

We talked, I cried and we decided to agree to the referral for speech therapy. Grayson’s speech therapist, Lisa was a lovely lady with a really warm smile. Each session resulted in a report with activities for me to try at home.

The main focus became Grayson’s listening and following of instructions which was non existent really. We made some gradual progress although this was in the following of one part instructions whereas children of Grayson’s age at the time typically would be following two part instructions.

Months went by, Grayson turned three and we were working extremely hard on language both at home and in clinic, unfortunately making little progress. We were still at just a few single words.

Meanwhile, outside of speech therapy, the other mums were starting to reach the point where they could sit and sip a coffee while their kids played with each other, dressing up in roleplay costumes and running cars along tracks or making imaginary toast in the toy kitchen and bringing plastic plates to their mums. They were also talking to each other, gorgeous mini conversations. Grayson didn’t really say anything at all.

The Walls Were Closing In

In a constant state of hyper-vigilance I’d be running after Grayson, sweating, pulling him away from doors, from switches, desperately trying to comfort him out of his constant shrill squealing and overly apologising to everybody we came across. My mantra with friends became “Can you just watch Verona for a minute”? Despite being constantly surrounded by people, it was the loneliest time of my life.

All of a sudden, over time more words and little phrases began to emerge which I took as a breakthrough. I was so excited, even managing to convince myself that Grayson could perhaps be discharged at the next appointment.

The day that I’ll describe now, that next speech therapy appointment is etched in my memory forever more. I remember every detail exactly, right down to the colour of Lisa’s lipstick.

We had been going to speech therapy for nine months. The dreaded A word had been uttered already, numerous times by Jon. My own mum had also voiced concerns. I was still wrapping that denial blanket around me, snug and tight.

I was reassured by lots of new phrases. The therapy was working. It was all going to be OK. I bounded into Lisa’s office and excitedly reeled off each new sentence from my notepad. They were all from books or television programmes, from rhymes and songs. Lisa smiled compassionately and asked “Have you heard of the word echolalia?”

The Painful Truth

Typically developing children learn language as component building blocks then they learn how to piece those blocks together to form meaningful sentences.

Months of speech therapy had revealed that Grayson learns language as arbitrary chunks, devoid of context. The outcome is a child very much like a talking doll where you press a button and pre-programmed phrases are played, simply repeated over and over, these learned phrases.

The next thing I knew this trained professional, she too was saying the A word out loud, to ME in relation to MY perfect little boy. My world fell apart. I cried there and then for what seemed like hours and I hugged Grayson tightly. He was completely oblivious of course.

Lisa hugged me, she told me what a dedicated and loving mother I am, how Grayson is wonderful and so, so lovable. That was the day I could no longer deny it. Jon knew, Lisa knew and I knew. Grayson was autistic and he would be autistic for his entire life.

The Autism Assessments

The biggest fear is the unknown. So while we were waiting for that first CAMHS appointment, I threw myself into research, online communities, the local National Autistic Society events.

I threw myself into all of these things with more gusto than I did with my dissertation, way back when life was simple and carefree. I can’t in honesty say that this helped any more than denial did. It was obsessive, desperately wanting to know every little bit of knowledge in order to get my head around this whole thing.

I was bitter and I was jealous of parents with typical children. I wallowed in self pity. I punished myself. I punished my husband. I distanced myself from people I felt no longer understood me, understood us.

The CAMHS appointment date came around quite quickly really and Grayson underwent some initial assessments with a special needs nursery nurse both in clinic and at his nursery before we were sent a paediatrician appointment.

When the date came around off we went, already knowing the answer. Grayson tiptoed through the corridor, as he tiptoes everywhere even now, slowly running his hand over the wall exploring the surface the entire time.

In the room the paediatrician, Professor A addressed questions to Jon and I, questions about the pregnancy, the birth and development so far. His eyes never moved away from Grayson, he was analysing every bit of facial and body language.

To Grayson, Professor A didn’t exist. Some toys had been laid out but Grayson was fixated only with the cable grommet on the desk (the little hole that cables run through to keep your desk tidy). The desk didn’t house a computer and no cables ran through the grommet, but Grayson had discovered that the cover could be spun around and he became lost in his own little world where twirling this cover around was everything.

We didn’t get a diagnosis that day, this was a mere bridging service, as here in Stafford CAMHS don’t diagnose autism, they just pre-assess and then refer on to the commissioned autism service Midlands Psychology, if they are confident that it is actually autism.

Lots of families get bounced back from this point, discharged or re-routed depending on how the child presents. The intimation for Grayson was that the diagnosis was as good as made. We of course already knew this.

What Professor A did give us that day was hope. He is where Beautiful Caterpillar comes from.

He told me that he saw me, watching and anxiously waiting for my little caterpillar to morph into a beautiful butterfly, and he promised that Grayson would do just that. It was going to take longer, it was going to be hard and Grayson’s wings would have very different colours to Verona’s…but mark his words, Grayson would morph into a very beautiful butterfly.

The Midlands Psychology process consisted of a series of group multidisciplinary assessments. The children were all pre-school age and the professionals there consisted of several child psychologists, a speech therapist and an occupational therapist.

They all had clipboards and parents sat around the perimeter while the children were observed at play, the different professionals approaching them and attempting interaction at various points. It felt like Grayson was a lab rat.

I was alone with Grayson for this round of appointments oweing to a big project deadline for Jon. I didn’t really speak to any other parents which is really unlike me. I sat there and I cried silently.

Just A Piece Of Paper

A few days later a letter arrived in the post confirming that Grayson had a working diagnosis of autism.

What I felt by that point? Relief. Overwhelming relief that now I had this piece of paper and I hoped that it would open doors.

I did most of my grieving before the actual diagnosis and I can honestly say that things have got better since then, better in tiny incremental steps, but when you really take stock those gradual improvements amount to so much success on Grayson’s part and tireless determination on our part.

We have some really challenging days but that piece of paper has opened doors and in my next upload I’m going to talk about some of the positive ways that the diagnosis has aided our transition and our adjustments to our new normal.

That piece of paper, just a piece of paper… it changes so much. What it cannot, will not ever change though is the undeniable charm of our little sprout or the unwavering strength of our love for him.

Happy birthday to my darling son, my Grayson. If you have to find a million more new normals as you navigate your path in life, I’ll be treading that path right beside you until the day I die.

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