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.

Here We Go Again ... The Hunt For Diagnosis

We went for the doctor’s appointment on Wednesday morning last week to get the ball rolling with the ADHD diagnosis for Picklepot.

Our appointment was at 9.20am so we walked to the doctors after morning registration at school (So Picklepot’s attendance record wouldn’t be affected by missing morning register) and we arrived at the surgery at 9.10am. I had both boys with me. Sunshineface had a bad night so I was exhausted and he hadn’t woken up til late, so he’d woken up and had a nappy change, got dressed and got straight in the pushchair.

The doctors surgery seemed quiet, and when I booked in on the computer screen it showed a 12 minute waiting time. Considering we were 10 minutes early for our appointment, I thought that was fair enough. However the minutes ticked by and it became apparent that the 12 minute waiting time was a gross underestimation.

By 9.45am Picklepot was spinning, flapping and squealing in the waiting room, bored of waiting. There are a few childrens books on a small table in the corner of the room, and the ones aimed at really young kids he’d read to Sunshineface, and the ones for older children had pages ripped out and drawn on which made him upset because someone had done this awful damage to a book so he didn’t want to look at them. He span and flapped and squealed some more. I asked him to come and do it near me and not on the other side of the waiting room just so he wasn’t in danger of accidentally tripping and falling on someone else, or hitting them with a flailing hand or foot. I didn’t try to stop the stimming. I knew it was important for him to release the energy he had inside him.

I’d already warned him that I would need to talk to the doctor about him. He said that was OK, because it was to get the doctor to do a referral to a specialist who could help us better understand why he finds it so difficult to sit and concentrate like the other kids do at school. We were called in to see the doctor just after 10am. By this point Picklepot was bouncing off the walls.

The doctor we saw is what I call an ‘old school’ doctor. He has a big ancient wooden desk in the middle of his office, and a huge wooden bookshelf to one side with copies of Grey’s Anatomy and similar; he has models of skeletal systems, a skull with labelled areas, coasters that look like scrabble letters with his initials. He also had a Care Bears beanbag which Picklepot made a bee line for (after dancing around the room nosing at everything and asking questions about it all).

I didn’t try to stop it. When you’re there to get your kid referred for an assessment like ADHD the best thing to do is let them bounce and twirl and talk at ninety miles an hour and fiddle with everything because it shows the doctor some of what you’re experiencing and why you’re asking for the referral. So I left Picklepot to it and spoke with the doctor, who was very much in agreement with me about the need for assessment as he agrees its pretty obvious Picklepot does have ADHD as well. We discussed the mess up with the CDC and all of that – and both of us said at the same time “It’s like they deliberately make it difficult in the hope you’ll give it up”. He wrote the referral as I sat there. He took the notes I’d made and read though the letter that Mrs D had given me. (He also made sure he found the copy of it on the system before allowing me to walk off with that copy again)

We were in there for maybe 10 minutes, but I felt it was a good appointment. He’s definitely on the same page as me. As I was preparing to leave, he said that parenting could be challenging at the best of times and parenting a child as full on as Picklepot is an even bigger challenge but what we must all remember is that the person facing the biggest challenges here is Picklepot himself, so it’s important we do all we can to get the right assessments and diagnosis so that he can benefit from the support available. He said if I don’t hear anything in 4 weeks about an appointment for assessment he wants me to contact him again.

Here we go again, we’re going on a diagnosis hunt, we’re off to find the next one, what a beautiful day, we’re not scared … 

Why My Son is being Failed by the System

It was a long, hard road to get Picklepot diagnosed with ASD in the first place. I saw countless doctors who dismissed my concerns for ages, telling me I was over-analysing things, telling me I was a neurotic first time mother, telling me he couldn’t possibly be autistic because he made eye contact and because he wasn’t delayed in speech or language.

Without the support from his teacher, Miss B, and the school SENCO, Mrs D, I don’t know if I’d have had the strength to battle on. But they were in my corner, they knew I was right, and they gave me strength.

One doctors appointment the doctor had the nerve to observe him for all of 30 seconds and then say to me, “He seems normal to me. Why are you so concerned?” And, bristling from the comment of ‘seems normal’ – as if an autistic child is ‘abnormal’ by default – I slammed onto her desk my folder. I have been keeping a diary since Picklepot was in Reception. It is three and a half inches thick, with pages and pages of my notes, observations, print outs of information I have found that link autism signs with behaviour he has displayed. “This” I told her. “Read this. This is why I think he is on the spectrum.” She frowned at me. “I haven’t got time to go through all that. But really, he seems fine to me …” I glared at her. Mama Bear came out to play. “So on the basis of a thirty second appointment he seems fine to you so I’m meant to go away now am I? No. I’ve done this too many times. Let me put it this way. If you do not write a referral for an autism assessment, I will be back here, every day, with my folder, bugging you for the referral until it happens.” She thought for a moment. Then she said, “I’ll write a referral for him though, based on your concerns.”

We had various appointments after that with a specialist paediatrician at the local CDC (Children’s Development Centre) It was no surprise when he said in December 2014 that Picklepot was on the spectrum. In fact, it was a relief to hear him say it, after all we had been through, to finally know that I had been right all along.

I asked the doctor at that point, “What about the ADHD?” It was a secondary concern. Aware that the two conditions are known as co-morbid, and children on the autistic spectrum are far more likely to have ADHD, and with Picklepot displaying so many signs of it, I wanted a diagnosis for it all in one hit. The paediatrician refused to diagnose ADHD. “I don’t diagnose it in children of his age. They’re all displaying signs of it at this age. Come back in a year, and we’ll assess again.” I said that even his teacher and his SENCO had raised concerns of ADHD, and they were both well versed in dealing with children of his age (five years old, at the time) Still he refused, and insisted again on an appointment in a year to assess.

Fast forward a year. December 2016, and I’m anticipating a letter from the CDC with an appointment for Picklepot regarding his assessment for ADHD. I don’t receive anything, so I contact the CDC myself to ask about it. I’m informed that the paediatrician Picklepot was seeing has now retired. I say OK, so I need an appointment with his replacement. He said we would have an appointment in December 2016. Oh, says the receptionist. Looks like he signed off Picklepot as no longer requiring our care back in Easter. I am by this point very cross. He said we would have another appointment in December 2016 to assess for ADHD. I was not informed that Picklepot had been signed off from the CDC. Why was I not made aware? Oh, says the receptionist. We normally send a letter.

We normally send a letter. Well that’s really nice and all for those who receive a letter, but I didn’t. I’ve lived in the same house for almost 10 years and I did not receive a single notification from the CDC telling me that Picklepot was being signed off as I would have called them then and kicked up hell. So now I’m doing it on the phone, when I was promised a follow up appointment and I haven’t got one, when I was promised a further assessment and now I’m being told he has been signed off. No. Hell, no. You are not getting away with this. Mama Bear is out to play – again.

“Well how do I arrange an appointment for the assessment then?” I ask her. She informs me that he now needs to be re-referred into the CDC system. They will hold a meeting and decide whether the concerns raised warrant him attending an appointment to see if he needs an assessment for ADHD. I grit my teeth and ask, “How do I get him referred?” Oh, she says, either your GP or your school SENCO can do that. I ask her to confirm, as they would never accept a referral direct from SENCO for the ASD assessment. She confirms, Oh yes, the school SENCO can do it, that’s absolutely fine. So I hang up, and I go and speak with Mrs D, the school SENCO.

Lovely as ever, Mrs D says that’s fine, that’s not a problem, of course I will write a referral for an assessment, lets get this ball rolling and hurry up with this diagnosis. She knows as well as I do that in the last year, the signs of ADHD have increased in Picklepot, and he is now an anxious ball of emotions bursting at the seams and I am desperate for some help in soothing him. Mrs D then makes a call to the CDC to triple check she can definitely do the referral. Oh yes, she’s told, that’s fine. Who do I address it to, she asks. They give her a name.

Mrs D writes up a referral, and she sends a copy to the CDC, to the name they have provided her with as the person best placed to deal with ADHD referral assessment appointments, and she sends a copy to me, and a copy to our GP, and keeps a copy on file herself. We wait. Christmas looms closer and Picklepot becomes even more anxious, even more emotional, bursting into tears without notice, becoming violently angry with no apparent reason (to us), screaming and shouting and kicking and throwing things and then sobbing in my arms afterwards because he says he doesn’t want to be a naughty boy, he wants to be a good boy but he gets upset and his brain doesn’t work properly. My poor beloved boy, so desperate to fit in, to be like his peers, to not have these outbursts, crying because it all gets too much for him and he doesn’t have any other way of letting it out.

Mrs D receives a letter back from the person at the CDC she was told to write to. I am not the person you need to discuss this with; The CDC do not do assessment for ADHD; The patients GP needs to refer the patient to the correct department.

Why was I told by the previous paediatrician that the CDC did assess for ADHD?

Why was I not told by the previous paediatrician that he was signing off my boy before that assessment happened?

Why was I then told it was OK for SENCO to refer for assessment for ADHD?

Why was SENCO then given the name of the person to contact at the CDC for assessment for ADHD?

So many unanswered questions. I’ll probably never know.

At the moment, we’re waiting for an appointment with our GP, which is not until February (the soonest available appointment) Despite the fact it’s an appointment for the GP to refer Picklepot for assessment, not the actual assessment itself, I have to take Picklepot with me, my notes and my word aren’t apparently good enough to believe. Regardless of the fact this is a GP and not an expert paediatrician who fully comprehends and understands ADHD / ASD, I have to subject my child to being regarded by this stranger before we can get an assessment. I have to break his usual routine of school to take him to the appointment, so he will be upset about that. I have to sit in the doctors office and talk about him in front of him as if he isn’t in the room, something he absolutely hates, so he will be upset about that. I have to tell the GP why I think my eldest boy needs assessment for ADHD, so he will overhear me and think it is something he has done wrong or that he should change about himself, so he will be upset about that. And after all of that upset, I might get the referral for the assessment that we need.

The system is seriously flawed. After all of that upset, on top of how emotionally charged, raw and anxious Picklepot has been recently, he is going to be through the roof with his emotions. And it isn’t the CDC who will help calm him down when he’s sobbing his heart out and gasping for breath. And it isn’t the GP who will help soothe his fears when he’s awake in the middle of the night screaming in fear because he knows he is different and he says his brain doesn’t work properly and he doesn’t understand why. And it won’t be the receptionists I’ve spoken to who deal with the temper and having things thrown at them and having him lash out at them because he has all this emotion inside and he doesn’t know what to do with it.

Oh no, it’s not those who exacerbate the issue who have to deal with it. That would be me, his dad, his grandparents, his teachers at school. This system is flawed, and it’s failing my son.