Even typing the words doesn’t seem to make it real. And yet, since beginning discussions with fantastic school teachers it was always the underlying suspicion.
This week E and I attended an appointment with a consultant at our local Children’s hospital. It’s been a while since E and I had the conversation about why we were seeking help. And whilst I think it’s been underpinning a lot of thoughts in E’s mind, it was just a little bit in the rear view mirror.
The journey so far
We formally started this journey in July with an appointment with our local GP. We made sure we were prepared by working with E’s teacher who very kindly (given the time of year) provided a letter to support the appointment. After a quick review with E and I, a referral was duly made.
In August I gave consent for an initial assessment, and in September the school and I received questionnaires to complete. Something went a little wrong at this point.
Whilst the school had completed the questionnaire- I can say this knowledgeably as they were given to me to sign my consent- they never arrived back at the hospital. After not hearing anything for a while I phoned the hospital and established this. A few days later I received a letter sharing this information. In my mind I questioned if I hadn’t phoned, would the letter have been triggered.
After liaising with the school, the paperwork was resent. I phoned the hospital a few weeks later to confirm they had received the assessment, which they had. Having left it a few more weeks and not hearing anything I contacted them again- in the lead up to Christmas. I asked what the next steps would be, at which point I was told there was a six-month waiting list and not to expect anything. I levelled my expectations accordingly.
The next week I received an appointment. In my head I have confirmed that phoning was the right thing to do. I never want to be the pushy parent, but given the pressure on the NHS it is natural that things will slip through the net. I would encourage any parent in a similar situation to be a bit more pushy than feels right. Do it politely, be kind, but- as someone said to me- I am my child’s advocate, and I have one chance to do right by him.
Fast forward to this week, and we attended our first appointment. Just like the time when E projectile vomited all over a doctor which enabled a resultant diagnosis of pyloric stenosis, for whatever reason E was completely ‘on form’ for this assessment.
The appointment concluded with the diagnosis of ADHD. A letter will be sent to E’s school so additional provision, if appropriate, can be enabled. We talked about medication, but support was given to my preference to explore other mechanisms first. Mr J and I will be offered parenting support to accompany whatever additional support E is offered. And we’ll see.
It feels like the right thing to have done. But, in spite of everything- knowing it’s for the best- my eyes still prickle with tears.
We’re not alone, I know that. And I know already how fortunate we’ve been with a prompt diagnosis. And a diagnosis means we have access to the support which E will benefit from.
But it still feels difficult- to know E is all-encompassing, to know that part of who he is needs ‘fixing’ feels so odd. I know how difficult his behaviour can be. And, if I know this as a parent then for teachers and others it can’t be any easier.
But he’s E. My E. And I want to make sure the cheeky, naughty twinkle in his eye isn’t lost in all of this.Lead photo credit: Sarah Debnam Photography.