Family

Living with ADHD

Living with ADHD

I keep promising myself I’ll write this post. Then I encourage myself to pause and wait for progress before writing. And then I encourage myself to wait for the result of progress before writing. Until I realise this shouldn’t be a waiting game. There shouldn’t be a pause. Life should have moved further than it has since my last update.

Tom was diagnosed with ADHD in January 2018. I can’t begin to tell you how much I regret not accepting a medical solution when it was offered to me.

Whilst Tom’s diagnosis wasn’t a surprise, it still caught me off guard. I didn’t want to accept a medical solution if other strategies could be adopted.

What I hadn’t realised was that the moment I opted for a non-medicated approach I absolved the NHS of care. I hadn’t realised with medication declined Tom would fall off the radar.

I readily and gratefully accepted the support of Barnardo’s Cymru. First on a one-to-one basis and then through group support parenting classes.

Through the one-to-one support and the parenting classes I learned so much. Of supporting Tom, and his siblings. Of understanding what people should know about ADHD before making judgement. About how, teaching techniques determines our children’s outcome.

And yes, I come to this party with preconceived ideas. I know how differently my life may have been if it weren’t for those who made a difference to me. Years of speech therapy and additional support meant by secondary school I was perceived equal. I wonder how differently this could have been in today’s NHS- cash deprived system.

But yes, of Tom. I realised through the parenting classes and through speaking with Tom’s teacher that his struggles and a non-medicated solution may not be in his best interests.

I understood from the professionals who had been invited to the classes that Tom could have medication solely for the time he was at school. The benefit of this medication was there was no weaning process. And if it didn’t work we could, with medical support, stop.

I believed that I should give Tom the chance to find out if, at eight, a medical solution might help him at school, to feel like he is progressing along with his peer group.

I requested another appointment with his specialist, some ten months after his diagnosis.

Naively I thought my views and experience would be taken on board.

I hadn’t realised the NHS would have such strong views on Tom’s care when they hadn’t seen him since diagnosis.

I hadn’t realised the extent to which the NHS would absolve all responsibility for Tom.

As Tom has suspected learning difficulties the view of the specialist was Tom shouldn’t be medicated until the school has concluded its care plan.

I could scream.

Yes, I appreciate the NHS has been stripped of much needed funding, I just wish the NHS could appreciate the same of the education system.

It feels like forever that Tom has been suspected of dyslexia. And appreciated that this isn’t tested until year 3. Tom gets put on a list. It’s a long list, because teachers and SENCOs have so much else going on.

And yes, I need to mention that other schools local to us have notified parents of the intent to close on Friday afternoons in order to meet budget cuts. Life is rubbish.

But Tom’s my child. So I’m sticking with my selfish compulsion.

The consultant will not do anything for my son until the school has concluded its care plan. The school has been stripped of resource so will define this when it can.

My son meanwhile.

Has ADHD.

In my world, regardless of what diagnosis the school reaches.

My son struggles to read and write.

How on earth do you begin to focus on words which jump over a page when you have ADHD?

When you find it difficult to focus in the first instance, how do you begin to focus on something which has no focus?

What is easier than to be distracted when the thing you are trying to focus on has no structure?

How can my son begin to resolve his reading and writing ability when he has no commitment to focus?

I did hear the consultant. Who told me it was more important for my son to learn to manage his condition than to be medicated.

The struggle of living with ADHD

I did look at my eight year-old and wonder how and why I should expect him to manage his condition. Surely it’s a big enough job learning to be eight?

I did hear my consultant when she told me she was more concerned about my response (I was crying). I tried to explain that I was ill (it was December and I was full of cold) and I had preferred not to cancel this appointment. And I tried to explain that the most important thing for me was that my child never wants to not go to school.

I tried to explain that my son is a twin. He is acutely aware of how far behind he is slipping.

And he is beginning to not like school because he cannot convey quickly and efficiently in writing everything in his mind.

I tried to explain I shouldn’t be judged for being emotional but that my son should be supported to be his best.

So I was sent away with a promise to that they would contact Tom’s SENCO because nothing could be done without the school having a plan.

And I felt disappointed. It’s four months on and I feel as emotional and disappointed as I did that day.

There is, of course, more to say of the last four months. That I’ve realised, everything I didn’t want to be as a mum when communicating with others, is everything I need to be to get Tom what he needs to thrive.

How rubbish is that?

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1 Comment

  • Reply
    Emma Kyte-Howe
    April 19, 2019 at 11:02

    Sending you the best of luck with the school!!
    You probably know already, but I do believe you can access a private dyslexia test (try inspired learners in Barry, closed for the holidays mind). It is terrible they don’t test until mid-end year 3, by then the damage is done, the dyslexic child already hates school because of how far behind they have fallen, there is no funding for additional support, os they fall even further behind. I had a child leave the school your Tom attends, he hated school, hated learning, felt unappreciated and as though his best was never enough. He has progressed to comp, and from a child who wouldn’t do “own learning” he now flies through school. You will get there x

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