ADHD – The road to diagnosis

Following on from my post ‘How I Calm My Angry Child’, I thought I’d share our story. It’s a very long story so obviously some details have been compacted to make it easier to read. 

My son was diagnosed with ADHD at age 4.

Olly always seemed different to me, even as a baby he hardly slept, screamed for the majority of the time and at 10 months started head butting his cot, safety gates, the floor etc.

By age 1.5 – 2, Olly’s behaviour was difficult, he was constantly biting and hitting his older brother, adults and even himself. Nothing I did made any difference. When I talked to my friends about his behaviour, they all said the same sort of things “it’s common at that age” “he seems fine to me” and my favourite, “he will grow out of it”…he did not grow out of it.

At age 2 I decided to talk to a nursery practitioner friend of mine about his continuing behaviour. She suggested that I place him in nursery ASAP to see if his behaviour was the same everywhere and to start building evidence in case he needed referring.

Olly’s speech was significantly behind and it was thought that maybe his behaviour was caused by frustration of not being able to communicate effectively. He was referred to speech and language and with support from the nursery, his speech improved dramatically. His behaviour did not improve.

All strategies implemented at home and at nursery did not have any effect. He seemed unable to control himself. He showed some traits of autism so through our GP he was referred to our local community paediatrician.

In between waiting to see the community paediatrician, the nursery sought support from Specialist Teaching and Learning Service (STLS) to manage Olly’s behaviour. Many strategies were suggested but again, no strategies made any difference.

After months of waiting, Olly was seen for the first time in July 2013 and to my relief the Doctor actually used the words “well, that behaviour is not normal” Some people may think this is harsh but this was a great relief to me, to finally be believed, for someone professional to tell me that I wasn’t imagining it.

He was now under the care of the community paediatrician. What help did this get us? None, just an appointment for 6 months’ time and Olly’s behaviour was only getting worse.

When I went back to the community paediatrician months later, Feb 2014 with nursery reports and a report from STLS, Olly was referred to the under 8’s ASD team. I was told it would take roughly until September to get an appointment. 7 months!

I worked at the nursery that Olly attended. Initially I only worked when he wasn’t there but after his behaviour became even more out of control, neither my parents nor my husband’s parents could look after him anymore. 

In hindsight I wish I had chosen another nursery for him but at the time I was actually scared that another nursery wouldn’t be able to handle him. At the nursery I worked with such supportive people. My friend that initially gave me advice is the deputy manager there. She made sure a good bond was formed between Olly and his key person, and other members of staff so that I did not have to manage his behaviour while I was working. This worked most of the time.

I do have a very vivid memory of the day it all finally brought me down though, I had had an awful weekend with his behaviour, his behaviour was hard to manage at the nursery and the deputy manager was on a course for the day. I was talking to another child when Olly came over to me, and kicked my spine, as I went to turn he grabbed my hair and pulled…hard! As I tried to move him away, he slapped me on the cheek. After trying all the strategies we had been given, he finally calmed down by hiding under a table. At this point I asked for a member of staff to cover me while I stepped out of the room. This was the first time I had ever let it out. I was struggling, I honestly did not know what to do for the best, every road I went down was not getting me anywhere.

We tried everything we could, we attended behaviour management courses and a Solihull parenting group in the hope of finding something, anything that would help. The support from other parents was invaluable but nothing made an impact on Olly’s behaviour. 

Olly finally had a ‘multidisciplinary assessment’ in November 2014. At his point he was 4 years old and had begun school. I was told at this appointment that he did not score on the ASD spectrum on this day. Olly thrives on 1:1 attention so put him in a room with toys and 2 adults to play with him and he will be the calmest child in the world. They did not look at the reports written by the school, or nursery and did not take in to account anything I said. Their assessment is based on an hour with him in an environment that he thrives in. Reality is that he’s in a class of 30 with one teacher and a TA. I was told at this assessment, he is not autistic. I asked what could be causing his behaviour then and how we could best deal with it. We were told “maybe that’s just who he is and just keep doing what you are doing” REALLY!!? That is the best advice they could give me. They did tell me that they had some concerns so they would see him again in 3-6 months’ time but they didn’t tell me what their concerns were. 

Two months later, one of my worst fears became a reality, I arrived at my children’s school to pick them up as usual. When I arrived at Olly’s classroom he wasn’t there and neither was his teacher. I was told by the TA that Olly had hit his teacher in the face and I needed to go and see the head teacher. Everything from this point was a bit of a blur. I felt like I was having a nightmare.

When I arrived at the head teachers office I didn’t even sit down, I stood in the doorway listening to this woman tell me that the schools policy to deal with an incident like this is permanent exclusion. My heart stopped, PERMAMNENT EXCLUSION!? He is 4 years old!! 

Olly had become very anxious in class, he hid under a table. The teacher went down to his level and tried to get him out. He hit out his fist and got her in the face. 

The head went on to say that since he is only little she is only going to exclude him from one day. So the next day he would not be able to attend school and he can return after the weekend. This kicked a whole lot of anxiety in to overdrive. Walking him back home, he told me that if he wasn’t allowed to go to school the next day he was going to “jump in front of a car” because he wanted “to just die”. Now, I should say he did not know what he was saying. One of the things with ADHD is struggling to understand consequences of things and even now he thinks that death is something you can come back from.

But at the time, I’m walking him home from school, crying my eyes out, holding on to him for dear life while trying to assure my other son that his younger brother is going to be ok. To this date this is one of the worst days I have had. When we got home my son was unmanageable. I ended up taking him to his room and holding the door until he calmed down. He threw things, kicked things, head-butted the door, it took 2 hours for him to calm down. The next day I got an appointment to talk to my GP about his behaviour, this was the 3rd appointment I’d had regarding his behaviour and I was getting nowhere. My GP referred him to CAMHS. I thought at last I was going to get some answers. Was that the case? No. CAMHS refused to see him because he did not “fit the criteria”. No further explanation.

As a result of him hitting the teacher, Olly was moved to another class. When Olly’s behaviour continued to decline, the school made a referral to CAMHS, detailing his behaviour and explaining that he could end up being permanently excluded. CAMHS sent me another rejection letter.

At this point the local exclusion officer was involved, we also had an intensive family support worker and an educational psychologist meeting with us regularly. STLS were also involved and came to see Olly. All of these professionals and they were all at a loss of what to do next.

After 10 further exclusion days from school, the head teacher offered to fund a private assessment for ADHD as we all felt that’s what he had. Within 2 days we had an appointment to see a Child and Adolescent Psychiatrist in Harley Street, London. Ahead of the appointment I sent the doctor all reports on Olly and his behaviour. So 2 weeks later, we headed to London. By the end of the 1.5 hour appointment the Doctor said it was ADHD. Due to the severity of his behaviour and the impact it was having on his life we were given a prescription for Medikinet. Within a week, Olly was so much calmer. He still had his cheeky, funny, lovely little character but he was just calm, he started to be able to understand reason. He made it through the rest of the school year with no further exclusions…Until he started Year One.

In Year One, we faced further exclusions, a school that was failing to support him and requesting an Education and Health Care Plan. A detailed post about Year One will follow. 

I feel very lucky to have managed to get the diagnosis that helped to turn his behaviour around at such a young age. There are far too many stories of children not being given the correct support into their teens. I can only imagine how hard it would have been to have continued on the path we were on. Without the diagnosis and medication, we were on track for permanent exclusion and I’m pretty sure I was heading towards a mental breakdown. A diagnosis is not a cure, things are still tough, but it has gone a long way in getting Olly the support he needs. I hope that one day soon it won’t be so difficult to get our children the help they need and deserve! 

 

 

 

 

 

 

 

4 comments

  1. I can relate to that feeling of finally having someone validate that you are not imagining things. Too many children fall through the cracks and I’m glad to read that you persevered.

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    • Absolutely, far too many children go without the correct support. It’s just a shame that parents have to fight so hard to get help while the professionals fail them again and again. I hope more read my story and see that they are not alone.

      Like

    • Thank you for your lovely comment Emma. I wish I could say that it’s not so difficult for others but unfortunately there is next to nothing in the ways of support or diagnosis of ADHD in children under 8 unless paying privately. This means that for many families, a diagnosis may be out of reach. I hear stories of families struggling through and not getting a diagnosis until teenage years!
      I feel very strongly about getting these children support they need now rather than later. I wish there was more I could do but for now, sharing my story in the hope of helping others know they are not alone is all I can do.
      Feel free to share ❤

      Like

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