When we first from E’s referral for neurodevelopmental support, and ADHD was first flagged, like so many others do I started scouring the internet. I learned so much about living with ADHD but not about how the referral process happens, what ADHD is, and what a diagnosis means. I’m writing about E and my journey as much for others to find as it is for me to look back on. So, this is E’s ADHD diagnosis – one month in.
E was given the diagnosis by our local NHS hospital on January 29th. I was so grateful for the support offered when I shared this. There is the reality that ADHD is a known disorder, but when you’re suddenly faced with a diagnosis you suddenly realise you don’t actually know anyone else living with it. So I was overwhelmed and so grateful for the messages and comments received when I shared the news. They completely grounded me in this being something we can cope with.
Just over a week from the diagnosis, Barnardos was in touch to offer support. Within another week I received my first home visit. I think my shell-shock has been evident throughout, and I am learning that gaining this support so quickly is rare.
Our support worker* initially discussed parenting support classes. Unfortunately the current sessions are on a Friday morning which I can’t make work at short notice. So we’ve agreed to have home visits to start and I can register onto the next set of parenting classes. It’s worth noting that firstly, we’re completely fortunate to have these classes as they’re funding dependent – and other cuts have already happened; secondly, that they’re not the kind of classes you dip in and out of, you have to commit.
After the first telephone conversation, Cariad was back in touch to let me know about a trip being organised for half term. I eagerly agreed, the opportunity to get to know other families in the same position. The trip was really useful, and whilst it wasn’t so much about creating relationships with other families, it was very much realising how many other families are in the same situation.
On the trip, I found myself making initial judgements, because I think that’s human nature. But as the day went on it became so evident that every family is just trying to do their best. And that it’s so challenging to do the best for your children whilst finding your way through the system of health care and education.Cariad came to see us ahead of the trip, really for paperwork and an initial meet and greet. You wouldn’t believe how clean our home was in preparation- because that really is important. She didn’t use the loo, I tried not to be offended given the efforts I had gone to to make it smell pleasant.
The second home visit came after the trip and it’s been a complete eye opener. I knew I was naive going into this, but hadn’t realised just how much. In this session I learned more about ADHD, oddly I hadn’t read that it was caused by a chemical imbalance in the brain- even looking at the NHS website this isn’t immediately obvious. Whilst E has symptoms associated with ADHD (low birth weight and premature), the NHS website doesn’t actually explain what ADHD is.
Cariad shared brain scans with me. Mine and Mr J’s response was the same. The more colourful image was the ADHD brain because it feels like E has so much more going on. It turned out the ADHD brain was the one with the lesser colour, because of the chemical imbalance.
We talked about the need for constant positive reinforcement. Recognising that when you list the characteristics of ADHD they’re all negative. But in reality E has so many positives, which just need to be channeled.
We also discussed that if I, as a parent, can so easily list these negatives, it’s easy to understand how others might respond to a diagnosis and this label. And the need for E to understand the positives of who he is.
We looked at famous people who have ADHD, which was so enlightening. For E’s benefit, I’ve jumped on to the fact Will.i.am has ADHD. E is already a massive fan, having this in his back pocket will no doubt serve him well.
We talked how I can support E as parent. Of the challenge of giving E too many instructions that result in him not coping, and doing nothing. Something which most can relate to, but we seem to do as parents anyway.
And Cariad shared Youtube videos- of medical professionals talking about ADHD and of people with ADHD talking about how it feels. Which have been really powerful. Again reinforcing the journey we face.
As well as sharing a poem written by someone with ADHD. It took a lot not to cry.
We talked again about medication. And I still feel until I know and understand more I’m not ready to consider this. Hopefully the parenting sessions will enable me to talk to parents in their approaches to medication In the meantime at our next home visit Cariad is bring some more information from a colleague with expertise in this area.
Cariad asked how the school has responded. Which has turned into one of the most wild goose-chases of the experience. I said that I had written a note but didn’t like to chase until I knew the referral had been received. I felt a bit lax.
When I picked up the children that afternoon, I spied the SenCo so took the bull by the horns. Mrs H said that whilst she had heard from E’s teacher, the formal referral had not been received. Then explaining the referral would go from the hospital to the GP to the school. I got home and chased with our GP who said nothing was on record since November. I left a message with the hospital. Absolute kudos the hospital phoned back the next morning to say they had a 4-week backlog with clinical notes. And of course, the lady was lovely but constrained by procedure.
OMG. It’s absolutely fine. I feel so grateful I am already getting this support from Barnardo’s. But why oh why the NHS is so bureaucratic that a phone call/ email to Barnardo’s will suffice.
In the meanwhile, Barnardo’s has been back in touch to say the next round of parenting classes are in the evening after Easter.
I feel so fortunate that charities are able to give this level of support. It’s been overwhelming and appreciated in equal measure.
As for E. Of course he continues to thrive. We’re all doing a little more. Not that he gets into any less trouble than the others. But just so we understand that he has so much more going on that he might not hold onto the thing that matters to us.***I have to give our support worker a name, because this descriptor feels so wrong. So, as she appear to be, I’ve decided to call her Cariad. It’s not her real name.
** Thank you so much Mummy Matters for this one, it completely put things into perspective.