Crisis To Diagnosis - ADHD

When one child is in crisis, their sibling feels it too.

What I mean by that is my hubby and I were trying to change the school our youngest child was attending. She was a shell of a person. As though someone had taken the batteries out of her. Every day was a battle to get her into school as we went through the process of getting her an Educational Health Care Plan (EHCP). Then strategy after strategy in place to try and help her cope with our mainstream high school. A year-long battle started to change her to a specialist school.

Whilst all this was happening we took our eyes off the ball (so to speak) off our son. We hadn’t realised how much he was feeling the strain too. Watching their sibling in crisis every day and me doing everything I could to help her.

I could see how unhappy my son was but maybe I was too busy to see how unhappy he really was. I’ll never forgive myself for that.

It was coming up to Christmas and we were having more and more arguments with my son. I’d never had a 14 year old before (he’s my eldest). Was this normal teenage behaviour? But then he kept saying little remarks about how we needed to change the school for his sibling, we needed to get her out, it’s horrible to watch her like this. We are not a family who shouts and screams at each other. We have always chatted things through. We sat him down to find out what was really going on.

I can still visualise this moment. The moment when he said he didn’t matter.

Didn’t matter? Is that how he really felt? How could we have not seen this?

The more the conversation/arguing continued I could see how much he was hurting. It wasn’t easy. He is stubborn. As a male he was saying he was “supposed to have it all together, not show his emotions, be ok”… Erm, no! I didn’t think we had raised him to think like this. All emotions were valid, male or female. Keeping emotions in caused arguments. What was making him think like this?

Over the next few days he would talk to me. He would let me in a little and then say it didn’t matter. Talk to me about how he was hurting and then say it didn’t matter. I was so worried about him. His bedroom was downstairs. I remember crying one night saying I was dreading each morning. Each night I went to bed, I wasn’t sure if he would do something during the night and I would find him dead in his room the next day. We sat crying together and he admitted he had “found his bridge”. He felt so low that he had picked the bridge he was going to jump off. Yep. That’s how low he was. He promised me he wouldn’t do anything to hurt himself that night and the next day I contacted his school and asked them for help.

School organised some Cognitive Behavioural Therapy (CBT) for him. He has an initial assessment and he was put on a waiting list of about 4 weeks until a therapist became available. He didn’t want to have it at first. I explained I’d had CBT a few times. When we chatted through what it was he said he would give it a try.

The waiting list, although very short, was still a long wait for the situation we were in. We chatted every day and the relief he said he felt because we had started to really share with each other had made him feel like a weight had been lifted off his shoulders.

His therapist came to school. He had 6 sessions. Each session became another way we could chat through his emotions at home. We would talk about what was happening each day and how he was really feeling.

It was during these chats that he told us about how much he loved singing. I knew he relied on music a lot. He always had an earphone in one ear with music on. He was taking advantage of free singing lessons at school and was loving them. We looked into places where he could do this on a weekend and got him a place in the local Pauline Quirk Academy (PQA) venue. Things were slowly improving. He made friends with 2 new people. They met at a point in their lives where they needed him as much as he needed them. They are so very close now and it’s a very special friendship.

As he came to the end of the school year, he asked if he could change his GCSE options from business and IT to drama and dance. We had a meeting with the head of Drama and Dance where he chatted through his reasons for wanting to change. They agreed to the change and it was the best thing to happen for him.

He started to talk to us about how he loved performing. He joined Oldham Theatre Workshop where he performed on his first theatre stage. Watching him up on stage was electric. He became alive. He has found his place in life and decided this was his future. He went on to college in Manchester and started looking into drama schools in and around London. I can honestly say that musical theatre saved his life.

Roll on 3 years and I was looking into strategies for ADHD (Attention Deficit Hyperactivity Disorder) for myself and my youngest child. We had been learning about autism by that point for about 6 years and some strategies just weren’t working for us. I had been learning about late diagnosed ADHD and how being autistic and having ADHD affect each other. I was also supporting a friend through their own assessment for an ADHD diagnosis and so the topic was being talked about more and more at home.

We kept a close eye on my son and kept the lines of communication very open. Whenever we felt he was starting to shut down or shut us out we sat down and had a proper catch up. He was still up and down, having panic attacks and struggling with anxiety but two months before he turned 18 he said he had been looking into ADHD for himself. Over the years he had often asked me if I thought he was autistic. I had thought about it over the years. I thought more that the autistic traits he had was possibly because he had been brought up by an autistic mum.

It was like a lightbulb moment! How could we not have seen it before? It wasn’t autism. It’s ADHD!

He started sharing Instagram reels with me that he identified with me. He asked me what having a diagnosis meant to me and how I felt when I got my diagnosis? I explained that the diagnosis didn’t get me any extra help. I got it and was very lucky to get another couple of sessions with the therapist who

did it. Other than that, I had done the research online and read books to learn more about it and find out strategies that would help.

We talked about what a diagnosis would mean to him. The only major difference we could determine was that if he wanted medication for ADHD then he would need a diagnosis. He thought that this may help. He wanted his brain to slow down for a minute and thought medication may do this for him.

He booked in with the family doctor and I went with him to chat it through with her. She asked him why he thought he had ADHD and he reeled off a lot of reasons why. She asked if they were recent things or had they been happening for a long time. Then asked me what my thoughts were. One of the things I had learnt along the way with all neurodiversities is that it’s not something that develops over time. It’s there from when you are born. I had thought back to my son as a baby and toddler and throughout his childhood and said yes the signs were there but we just thought he was a boy who needed little sleep and was a twirly whirly child! We chatted some more and she had enough evidence that she agreed to refer him. It was then a week until his 18th birthday. She said if she waited a week to refer him then he would be seen as an adult under the “Right To Choose” scheme where things moved quicker than the under 18s option.

We looked through which 2 providers offered medication and read through their websites. The shortest waiting list was 12 months for an assessment then another 6 months for medication. He opted for those.

We started looking for strategies and I bought Alex Partridge’s book - Now It All Makes Sense as he was someone my son related to a lot. We found the book really helpful. Strategies that we tried included leaving things out (because if it was out of sight, it was out of mind), getting a whiteboard for his To Do list. We would help him tidy his room so he wouldn’t feel as overwhelmed. We would give him deadlines to help procrastination. These are just a few of them.

Whilst talking to my wellness instructor about my son, she mentioned her husband. I knew he held breathwork sessions as part of their wellness practice and she suggested they have a chat to see if he could help. It was the most helpful 2 hours and he decided to try a session. At the end of the session he said his brain had stopped being busy. It was the first time in his life he had experienced silence. It lasted until the next morning and he had a great night’s sleep!

He went to more sessions and decided off the back of this that medication may not be the way forward for him. He returned to our family doctor and got re-referred to a provider who didn’t provide medication and had a waiting list of 10 to 12 weeks.

He has his assessment date through and hopefully by Christmas he will have had his assessment and his diagnosis report back. When this has happened I’ll write a blog about it all, just in case it can help anyone. That’s what all these are for. Hopefully they can help someone else.

For those of you who know me personally, you will know how much I am proud I am of my children. They have both been to hell and back and have now both got bright futures ahead of them.

Musical theatre will always hold a special place in my heart as I truly believe that is what saved my son’s life. He is now studying musical theatre at Italia Conti in Woking and we are beaming that he is living his dream.

JuJu x