Twins

The diagnosis – ADHD

The diagnosis - ADHD

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. An ADHD diagnosis

And now

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.ADHD in a twinLead photo credit: Sarah Debnam Photography.

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13 Comments

  • Reply
    Sarah | Boo Roo and Tigger Too
    January 31, 2018 at 07:29

    Gaining a diagnosis for E will be both a weight off your mind, with a new one added for what the road now holds. With you and Mr J in his corner he has the best possible chance of getting everything he needs

    • Reply
      Debbie
      January 31, 2018 at 07:59

      Oh, thank you x Almost crying reading this but on a train so trying to appear sane.

  • Reply
    Nicky Payne
    January 31, 2018 at 08:32

    Agree wholeheartedly with Sarah. He couldn’t wish for better oarents and advocates. Sending lots of love to all of you xx

    • Reply
      Debbie
      January 31, 2018 at 18:30

      Thank you Nicky xx I hope you are all doing well. x

  • Reply
    Perdita
    January 31, 2018 at 11:45

    I have worked with many kids with ADHD who have not lost their sparkle, nor been medicated. They don’t need to be ‘fixed’, but they do need support to manage in a neuro-typical environment (and then strategies they can manage themselves, as it doesn’t vanish at the age of 16!) so if caught early, plenty can be done.

    Most of these students do fine at school and go on to university or employment, happy and well rounded.

    • Reply
      Debbie
      January 31, 2018 at 18:33

      Thank you so much Perdita x I’m hoping I’ll learn a lot more in the coming months. Your words are so reassuring and much appreciated.

  • Reply
    Louise Gardener
    January 31, 2018 at 12:51

    My partner was diagnosed last year at 42 he’s getting a ot of support, I suspect that my teenage daughter also has it, but it affects girls differently, I’m worried her GCSE’s will suffer as she struggles to concentrate in school, I was wondering if you minded letting me know where you were sent after GP’s appointment, we are also near Cardiff, the place my partner goes is for adults only.

    • Reply
      Debbie
      January 31, 2018 at 18:37

      Hi Louise, it’s so reassuring your husband has support. The referral was initially to St David’s and the appointment was with a consultant at the children’s centre at Llandough. I hope your daughter gets support. x

      • Reply
        Louise Gardener
        February 1, 2018 at 08:46

        Thank you so much for the info. x

  • Reply
    Mandi
    January 31, 2018 at 13:19

    I totally understand the slightly pushier parent attitude, we were the opposite with paperwork, they sent it 3 times for T!! And our journey to get an official diagnosis was a while coming, like you I do wonder if I hadn’t been on the phone more than normal, whether it would have even happened yet! But now that there is an official diagnosis it will be much easier to access the extra help that is required, but whatever is or isn’t required he has fabulous parents (and siblings) that will help him every step of the way, and believe me their cheeky naughty twinkle never leaves x

    • Reply
      Debbie
      January 31, 2018 at 18:38

      Oh Mandi, you couldn’t make it up! I hope T is doing well? Thank you so much for the reassurance, it means a lot. x

  • Reply
    Sabina Green
    January 31, 2018 at 14:27

    Aw Debbie we know this feeling albeit we didn’t find out with Will until he was 14. We didn’t push hard enough despite always having that instinct that something was ‘different’. He is 16 now and doing well, he is still our Will but a slightly more together one. He still drives us potty as we would expect any child to, he still argues with his siblings and tells rubbish jokes but in his words “before he felt like his thoughts were flying in the air” and he couldn’t “keep hold of just one thought’, now with his medication he feels he can put his thoughts into order. I know you don’t want to consider medication at his age but in time don’t be frightened by it either xxx

    • Reply
      Debbie
      January 31, 2018 at 18:42

      Oh Sabina, what a lovely way to look at how support can help- I can definitely associate with the need to hold ‘one thought’. It’s so good to read how well Will is doing. xx

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