We’re starting a new journey. It's much like the journey we started twelve years ago, only this time we, his parents, are a lot less ”green” around the whole process.
Ethan is to begin his journey into adulthood services.
Adulthood - ”The state or condition of being fully grown or mature”
Adulthood and Ethan were never really discussed with us throughout Ethans life.
The reason being, that most children with Ethans condition (Hunter Syndrome) rarely see adulthood. As Ethan aged and his abilities slowly declined, doctors began to talk about his possible teen years and what they could look like.
They were right about some of his teen years but there was a lot they didn't know and only learned as we, along with Ethan went through those teen years.
The teen years were not kind to Ethan. They are what I would now call, the years that took the most from Ethan and us as a family.
I remember when Ethan was younger, before he reached the teen years.
He was wild. He was a four-foot whirlwind who never saw danger and only stopped when he fell. He’d ask me to look at his cut and tell him if a ’Freddie’ was needed. A ’Freddie’ was the name the nurses gave the injections Ethan regularly injured.
Ethan always ran like he knew it would be something he'd only be able to do for a limited time.
That has always struck me, when I think back to those early years--he’d run through fields, paths, shopping isles and roads like it was a gift to be able to do it.
He would learn new words as quickly as he mislaid them.
He'd understand very basic communication and I remember so clearly the day I asked him to bring me in his shoes and his bag. He was gone ten minutes but back he came with both items and a huge smile ”I did it mom. Tweat now?”.
I adored the way he mispronounced words and how he never seemed to mispronounce curse words until much later in his life.
Yet, he exhausted me.
There was no off switch.
If I brought him somewhere outside of our comfort zone, I spent a lot of that time apologising or explaining why Ethan did what he did to that kid or that adult.
Sleep was as foreign to Ethan as this social distancing was to all of us a few months back.
If Ethan don't want to do something there was nothing I nor God himself could have done to get him to do it - most of these types of things included; haircuts, bathing, brushing teeth, leaving hearing aids in, refraining from biting anyone, not cursing at priests, teachers, specialists, little kids (I had to pick my battles, often!) and so much more that only now, looking back, I wonder how did we get through those early years with all those behaviour issues?
Back then I wished for the quieter years the doctor had assured us would come.
By the teens Ethan was quieter but not like I had expected.
Sure, he slept much better, (most of the time) but he began to try his hardest to speak for only incoherent shouts to erupt from his mouth. This left Ethan with an anger we had never seen before.
He was no longer the affectionate little boy he once was.
He became less and less interested in us and the world around him.
Doctors told us it was a mixture of hormones and the syndrome affecting his brain. They assured us the anger we were seeing would eventually taper off and more than likely take the last of Ethans speech, his ability to walk and even his ability to swallow.
Ethan is 18 and is classed as an adult.
Ethan no longer walks unaided. He no longer feeds himself and has often had to be tube fed due to behavioural issues and ill health. He no longer speaks. He spends most of his bad days shouting, hitting us and himself. He doesn't sleep for days at a time. He finds joy in very little on these bad days and sadly since this lockdown, these bad days are more common than good days.
After this lockdown, Ethan will be classed as an adult and will have to go into adult services and when in hospital, he will have to be treated as an adult.
Ethan is still four foot nothing, wearing aged 11 clothes and is often mistaken for a child of 10 years of age.
I understand that most adults with disabilities need their independence and need to move onto adult services as they make their own path in this life; I can't help but wonder about adults like Ethan, the forever child, trapped in a body and mind which constantly reverts backwards rather than forward?
Alas, we have no choice but to face this transition into adulthood with Ethan the only way we know how; with a deep breath, notebooks(of who is who), calmness on the outside while panicking inside, with gratitude that our son is seeing adulthood unlike so many boys before him, with a bucket load of hope and of course our sense of humour especially when we met the doctor that stares at us blankly when we say the words - Hunter Syndrome.
My hope right now for Ethan, is that the transition into his new adult day service and respite centre goes well, as he has not had the transition path, he should have had due to the coronavirus, like hundreds of young people all over our island.