Finally Getting Somewhere

It’s been a while since I last updated anything here, so I thought now I have something to update with I’d take the opportunity to write it down.

As you know, we’ve been waiting since February 2017 for an assessment for ADHD for Picklepot. We finally got a preliminary appointment with the ADHD nurse in September 2018, and after spending forty-five minutes in a small contained space with myself and Picklepot, she looked at me and said, “Is he like this all the time?” So I said yes. She asked how I coped with it. I said I wasn’t aware I had a choice – he’s my son, and since I can’t poke him back where he came from I had to cope with it 😉 It’s just something you do, as a parent, is cope with your child, because when nobody else is willing to help you (professionals I mean) what other option is there.

Anyway, at the end of a two hour meeting with her, she said that there was no doubt in her mind that Picklepot did indeed have ADHD, which is a very common co-morbid issue to have alongside the ASD diagnosis. A week or so later, I received the report from her, in which she’d detailed a lot of information about what she’d seen and she’d picked up on a lot of subtle things which I wasn’t sure she would notice during that meeting, so I’m very grateful that she’s obviously on the ball and she knows her stuff. In the report, she recommended that Picklepot had a formal assessment with the Dr who can then put the official tick in the diagnosis box and once we have that we can then move forward with how to help Picklepot deal with everything, and strategies to help us deal with it too.

The weird thing about that was that the letter for our appointment with Dr A had arrived the day before, and was set for 22^nd October, so I already knew we were getting that appointment, and I was surprised (in a good way) how soon after our original appointment it had been set up. We went along on Monday to meet with Dr A and once again we were in quite a small room – Dr A didn’t have a box of things to fiddle with as the nurse had done, and Picklepot quickly became very restless. He was moving around the room constantly, touching sockets and light switches, standing on chairs to look out of the high windows, he stood on the measuring thing to see how tall he was, stood on the scales to see how much he weighed, wanted to play with the blood pressure machine but I saw his eyes lock onto it and managed to distract him away from that before he touched it! When it was time for the doctor to talk to Picklepot directly he first wanted to sit on the bean bag on the floor, then changed his mind and wanted to lie on it, then he put it on top of a chair to sit on the bean bag on the chair, eventually he settled for sitting in the chair with his feet on the bean bag but he continued to fidgit and move the whole time. He found it difficult to understand the doctor, who has an accent he isn’t used to, and he was looking at me a lot for confirmation of what the doctor had asked, or for clarification of what was being asked.

The letter had advised to allow an hour for the meeting, in reality it was again closer to two hours. When we left Picklepot was bouncing off the ceiling and chattering away at a million miles an hour, as usual.

The doctor has confirmed ADHD diagnosis (he said it’s very obvious and he hopes that if we work together we can work out a way of treatment that will greatly benefit our whole family). He said that for school it might be best to consider medication to help him concentrate on what he needs to concentrate on, but he did warn that due to the ASD it may not mean that Picklepot is able to conform entirely to the mould that the government expect from children his age. He said if we do medicate it will help the concentration, but it won’t give Picklepot the reason “why” he is expected to do something at school, why he needs to write things down (if he knows it, and I know he knows it, and the teacher knows he knows it, he sees no point in ‘proving’ it to anyone else) This is, the doctor confirmed, a classic ASD trait and will not be something that can be resolved with ADHD medication, so he warned me that we would still need to deal as best we can with that side of things – but that is what I expected anyway, so no shock there.

The doctor feels that Picklepot’s sleep issues are potentially related to his body not being tired enough for sleep – though he is continually on the move, he doesn’t do any structured sport (with the exception of PE lessons at school) so he has recommended that we look into something along the lines of football, tennis, swimming, dance etc, something with a routine class in place where he does specific tasks and learns new things each time, and at the end of a set period EG a term he can see how much progress he has made. The doctor feels this will help make him more physically tired, and ready to sleep. On this basis I am looking into swimming lessons as this is something he is particularly interested in.

The doctor will send me an information pack about ADHD, included in it will be a number of things we can think about trying to help Picklepot going forward. One of these things would be medication, which the doctor does recommend in Picklepot’s case, but he was very clear that ultimately the decision needs to be discussed and agreed between myself and Daddy P. At our next appointment we will discuss how we would like to proceed, and start down that path.

I came away from the clinic feeling relieved that we finally have a formal diagnosis, relieved that we now have a plan of action to move forward, but also somewhat disappointed that it has taken me so long, so much battling and fighting for the services needed, to get this far. I understand that it is not the fault of the wonderful staff who have dealt with us, but the fault of a damaged system which is not providing enough staff to keep this rolling at the speed it should be. If I had given up fighting for Picklepot after finding out the paediatrician had discharged him then we would not have got this far, and Picklepot would be continuing to struggle to cope, his school work gradually suffering, his frustrations and his anger issues getting more and more out of control, until what? Until he fails the school system and gets into trouble for fighting, or worse? Until he’s arrested as a young man and enters the court system, unable to control himself and unable to understand why? This system seriously needs more support than it currently has, and as someone who has mental health issues myself I feel it is falling seriously short of supporting our young children and their mental health. If a child of 8 is ignored when he has such issues, how is he expected to be able to deal when he is 13, or 16, or 18, or 21?

So here we are now, we have a diagnosis of ASD and ADHD for our 8 year old whirlwind of energy, and I am hoping that moving forward we can now get the correct support in place for him in school as well as at home (and at Cubs, and the other after school clubs he attends) to be able to help him realise his potential.

I’m a very tired mama, but I will not rest until my child has all the support he needs, and is entitled to.