Sunday, 18 June 2017

The Weekend of Ugh



What a horrible weekend.

It started on Friday, at school pick-up. Picklepot was being very silly, not listening, running off, acting up etc. I put it down to him being over-excited about it being the weekend, and we hustled home to get ourselves ready. We had a Beavers badge ceremony that evening, followed by a BBQ. We got to the ceremony and Picklepot was quiet and out of sorts. Halfway through he went to the loo and on his way back he asked if we could go home. I said we had to wait til the ceremony was over. Once it was over I said to him about getting BBQ food as was our plan but he wasn’t feeling it and he wanted to come home, so we did. We picked up McDonald’s on the way back as none of us had eaten dinner (thinking we would be getting BBQ food) but Picklepot only wanted his milkshake, and didn’t eat any of his meal. He went to bed and was awake a lot that night with a raging temperature, crying and screaming. Around 2.30am Sunshineface also started crying, so I ended up dozing in the chair with Sunshineface while Daddy P stayed with Picklepot in his double bed. None of us got much sleep.

On Saturday I woke with a sore throat and a banging headache so I headed to the shop for orange juice before Daddy P went to work. After he left, the boys and I had a quiet day. I cancelled our plans to go out with the ASD group because we weren’t up to it, and I managed to get some work done. I took Sunshineface up for a nap just after 12 and when I came downstairs just after 1 I found Picklepot asleep on the sofa. It’s a sure sign he’s unwell if he falls asleep in the day! I got some more work done and slept myself til 5, when Sunshineface woke up. Picklepot stayed asleep until 6pm.

It was a late shift for Daddy P so the boys and I had our dinner together at 6.30pm but none of us really ate a lot. It was the first thing Picklepot or myself had eaten all day. After we finished I cuddled up with both boys and we watched TV til Daddy P got home. We took the boys up to bed and once they were settled I crashed in bed myself. I was exhausted and I felt rubbish.

Overnight Picklepot slept through but Sunshineface was awake a lot. I think he was hungry though because when I gave him some more milk around 5am he finally settled. Daddy P was up and off to work again early this morning but the boys and I slept in til 9.30am.

I woke feeling even more rough than yesterday. I’m running a temperature, my throat is sore, my head is banging and my glands are swollen. I washed and sterilised the bottles and made them up; loaded and ran the dishwasher; loaded the washing machine and tumble drier / folded the stuff from the tumble drier and re-loaded it with another washload / I’ve done plenty of work today and everything is up to date. I put Sunshineface down for a nap just after 1pm and Picklepot and I had some toast as our lunch.  I’ve done some more work since then and reloaded the tumble drier / washing machine for another cycle.

It’s hot today (27 degrees) and the dogs are lounging in the kitchen not doing much on the whole, but then every now and then they’ll go outside and start barking and when they start they won’t stop and its bloody annoying so I have to keep going to tell them to shut up and come back indoors. I don’t want to shut the back door because it’s so hot in the kitchen with the door shut, particularly with the tumble drier running. It’s frustrating though when they’re running around barking at birds / bees / clouds / the noise of families talking and playing in other gardens.

Daddy P finishes work soon and when he gets home I’m going to enjoy a nice shower as I’m feeling all hot and disgusting. He said he’ll sort out dinner but truth be told I’m not sure what there is to cook / what any of us will eat anyway.

I feel frustrated, because it’s such a waste of the weekend – we’ve sat at home and watched TV and slept – and I feel annoyed because I’m sick as well as the kids, which sucks – and it’s a waste of such gorgeous weather – it’s so rarely hot and sunny in the UK I feel we should have been outside, enjoying it, not stuck indoors feeling sorry for ourselves. These things can’t be helped though. I just have to get over it don’t I and not dwell on it.

I’m not going to be able to give blood as planned on Tuesday because of this sickness – whatever it is – I’m not fit to give blood according to their guidelines, so I need to reschedule, but the app isn’t working properly so it won’t let me reschedule which is a pain. I’m also due in the office tomorrow but that’s not happening – not when I feel so rough. Also planned for this coming week is the yearly team bonding day with my office buddies; it’s planned for Thursday, so I’m hoping I’m well enough by then to participate and enjoy it! Then on Saturday we’re due to drive to Surrey for my nephews birthday party and an overnight stop at my mums house before travelling home on Sunday.

So many plans depend on me feeling better, and soon. I’m drinking orange juice and dosing myself up on paracetamol to take the edge off the pain. My skin feels prickly and my joints ache – it’s almost like flu, but less severe.


Fingers crossed we’re all better soon!

Saturday, 10 June 2017

Sunny Saturday Musings



It’s been a difficult week this week. Like everything has been ‘off’ ever so slightly and things just haven’t gone to plan, it’s nothing huge and life changing but its enough to put you out of sorts. Sunshineface hasn’t had much sleep since about last weekend. He’s been doing LOTS of crying, wanting lots of cuddles, being that sort of toddler that cries for being put down, cries to be picked up again, cries because you give him a drink, cries because you don’t. It’s like even he isn’t sure what will make him feel better. His temperature has been a little raised, but he’s been drinking plenty and having wet nappies, and he’s been alert and responsive so there’s not much to do apart from ride it out. It’s just tiring, having a toddler attached to you 24/7 while you’re trying to get things done, as any parent will tell you. I put him down to go to the toilet the other day and he screamed like I was murdering him. I was desperate for a wee. So I held him on my lap, on the toilet, while I had a wee. That’s normal, right now. That’s my life. Sleeping in a rocking chair in the nursery for more hours each night than you are in your own bed, because every time you think he’s settled and you creep back to bed, he wakes up screaming again. Wondering if it’s acceptable to take him out wearing just a vest because he is so hot or if people will photograph you and post it to Mums Net with an outraged rant about what an awful parent you are. Trying to function enough to do a hundred different things that need doing and ending up not doing any one thing til it’s finished. I have a half loaded dishwasher, a half unloaded tumble drier and a half drunk mug of cold coffee to show you that. Then suddenly yesterday he slept for a massive amount of time during the day – five hours! – ate a huge dinner and went to bed – a little bit later than normal, but not much – and slept til midnight. I couldn’t believe it. He then settled quickly, and slept round til 7.15 this morning.

He would have slept longer, but I had to wake him up as I had to get him in the car and take him with me to drop off Picklepot. He had to meet the Beavers at the local Tesco at 7:40am to go by coach to a fantastic day out that sounds right up his street. The information on this adventure place they’ve gone to says 100 activities available including archery, rock climbing and go karting. Picklepot didn’t wait to be asked twice when he was asked if he wanted to go. Fortunately for me the meeting time was delayed last minute from 6.15am meeting. That would have been painful. I had no choice but to take Sunshineface with us as Daddy P was working at 7am but I guess maybe with a 6.15 meeting time we could have risked leaving Sunshineface here with Daddy and me being home on time. It didn’t work out though of course. So after sleeping the best he has for the first night in over a week I have to wake up Sunshineface, change his nappy and stick him in the carseat without further ado. He wasn’t impressed, even after I let him have a Belvita breakfast biscuit.

Check out the look on his face! He's just like his Mama in the morning! Such a grump!


All week, because of Sunshineface being the way he has been, it’s been difficult to get the housework done, or my work; then yesterday Picklepot was off school sick (something he ate) But thanks to the epic nap yesterday on behalf of Sunshineface, I was able to catch up with work and then some. Picklepot felt well enough to play Minecraft; I said well you need to do your homework before you play Minecraft. He said but I’m sick. I said if you’re well enough to play Minecraft you’re well enough to do your homework. So now we have a homework free weekend because he did it within about five minutes yesterday morning because he was so desperate to play Minecraft 😉

After dropping Picklepot off this morning with a tightly packed backpack of items (a long list of stuff he needs, all to be crammed into a small size back pack the child can carry themselves – it was like tetris trying to fit everything in!) Sunshineface and I came home and I did some work and then we watched some TV and I drank coffee and at 10am he wanted to go upstairs for nappy change. We went up, I changed his nappy, and he snuggled down in my arms to go to sleep. I napped with him for an hour, then when I woke up I put him in the cot and he woke up again. I left him to it and he hasn’t made a sound since. To give you perspective on that, right now it’s 2.03pm. He’s been asleep since around 10.30am. My next door neighbours (the new people, not the nice couple on the other side) have been screaming at one another, crashing up and downstairs, (literally sounds like they’re moving furniture and having an argument while they do it), slamming the front door, slamming the car doors, more crashing around – how many times do you need to open and slam shut the front door? Can you actually close it like a normal person instead of slamming it so hard the front of my house shakes? Somehow Sunshineface has slept though all of that!

We’ve still received no update from the services contacted with regards to assessment for ADHD for Picklepot, which is now overdue from December from what I was originally told by the paediatrician that discharged Picklepot from care without telling me.

We’ve still received no update from the Autism Anglia service contacted with regards to my plea for help as I am helplessly watching Picklepot struggle more and more, and when they asked me for forms on 12th May I had them filled in and returned by 17th May and have not heard anything further yet I made it quite clear we need assistance.

I’m trying to be a bit more involved with the local Helping Hands ASD group. We’ve got a Facebook page now just for our meetings, so rather than clog up the official feed of the Helping Hands team which covers a wide area and more than just our Saturday group, we’re throwing ideas around together with things we can do and organising events for the families. It’s easy to sit back and wait for someone else to organise stuff but this is the sort of group where we need to make things happen for ourselves, and it’s nice getting to know some other mums with similar aged kids.  


Right now I’m going to take advantage of having this rare time to myself and I’m going to make – and drink – a whole cup of hot coffee and maybe watch an episode of Revenge while I have the chance! We got Now TV last weekend … I’m quite enjoying it so far!

Thursday, 11 May 2017

The End of the SATS is Nigh!




I spoke with Miss B this morning because one of Picklepot’s classmates said to me that Picklepot was hurting him. This kid keeps coming to me and telling me, and I keep saying, “You need to tell the teacher, or a dinner lady, when it happens” Because he won’t, he’ll wait til he sees me which could be the day after or it could be three days after the event. Anyway, I know this kid has similar issues to Picklepot, so I know he’s obviously heard somebody at some point say “I’ll tell your mum!” and so he thinks that is the way to deal with it. I spoke with Picklepot, and he said that it was yesterday, during ICT, this kid kept telling him he’d done it wrong, and he said no I haven’t, but the kid insisted he had and kept going on about it so Picklepot got annoyed with him. I explained again that even when he gets annoyed he isn’t supposed to hit people, and that if the kid wouldn’t get out of his face and telling him he was wrong he needed to call over the teacher and let them know what was going on, not resort to hitting the kid. So I spoke with Miss B, and she said OK, we’ll have a chat about the right way to handle things, because not only does the kid keep telling me instead of the teachers when he feels that Picklepot has done something wrong, but also because Picklepot felt the best way to resolve the situation was to hit the kid, which obviously isn’t the thing to do.

While we were chatting she said the SATS would be finished tomorrow and she was hoping that once it was all out of the way things would calm down. It’s not just Picklepot who has been up in the air about it all – a lot of the other kids in his class are finding it tough too. I found out Picklepot has to go off alone and do his SATS away from the other kids, because not only does he chat to them when he shouldn’t, but also because of his constant narration of everything. I don’t know if that’s just him, or if it’s to do with the ASD? But I’ve noticed it at home, too, he doesn’t do anything silently – he’ll narrate it, just like they do on those YouTube videos he’s such a fan of, even if there’s nobody there to listen, I’ll hear him from the other room rambling on about whatever he’s doing. Anyway the oher day it was Mrs S, the headmasters wife (she’s also a teacher at the school) who took Picklepot off for one of his SATS and he was quite proudly telling her that his scores didn’t matter, that mummy & daddy loved him anyway, that the SATS weren’t to test him but to test that the school had taught him everything they should have done, to test that the teachers had been doing their job properly – all of which I’ve told him, and his dad has told him, and we’ve gone through time and time again at home. He then finishes off this explanation to Mrs S by saying, “If I fail, Miss B will get the sack!” Where on earth he has heard that I don’t know. It’s certainly not something I’ve said to him! Poor Miss B! Luckily Mrs S laughed about it, and told Miss B who laughed about it and she was laughing when she told me, but then I walked home with one of the other mums and she said her daughter had come out with the same thing the other day at home! So it seems the kids have heard it somewhere, it’s beyond me where they’ve heard it, but apparently all the year 2 class believe that if they fail their SATS then their teacher will get the sack!!

Anyway as it is the last day of SATS tomorrow I’m hoping that we can do something to mark the occasion, maybe go out for dinner as a family or something, my mum is visiting tomorrow and it was her birthday earlier in the week so it’d be nice to take her out with us too. No plans so far for Saturday but I think Daddy P had a couple of presents hidden away for Picklepot for after the SATS so he might get those. Then on Sunday we’re off to my in laws for dinner.


Today I went for a lovely walk in town with Sunshineface, met up with a friend and we went for coffee, then we took a walk alongside the river in the sunshine, it was lovely and just what I needed to lift my spirits this morning. I felt a bit blugh first thing, I’m not really sure why. Tonight I’m out with my team from work, we won the ICE award for the month for being so damn good at what we do so as a treat we’re going out for dinner. I’m looking forward to going out with the gang, and going out in general – I get so few hours off from being ‘mum’, it’ll be nice to be me for a while! 

Sunday, 7 May 2017

Our quest for ADHD assessment continues



You may have read my previous post about the ridiculousness of getting to this point. Once the GP had sent the referral, I received a letter back which basically asked for me to justify why I felt assessment was necessary, and questioning whether I had really done everything I could to help support my child or was I just a lazy parent looking for excuses. On the letter, it said call us to discuss further. So I called them, and spent 10 minutes on the phone with a lady telling her all about the SENCO reports from school, the diagnosis of autism in December 2015, my attendance of a Solihull Positive Parenting group and subsequent pass of the course in July 2016, the amount of extra people that had observed Picklepot in class and the reports they’d written about him, all of which said that his behaviour pointed to ADHD as a co-morbid condition alongside his autism.

After 10 minutes, the lady on the phone said that all sounded fine, and please could I put it all in writing for them to look through and come to a decision. I asked why I had been instructed by the letter to phone, and she basically said it was to wheedle out those parents who are lazy and looking for excuses, as they rarely make the effort to phone. She provided me with an email address, so that night I sat down and wrote everything down in an email to send to them.

A few days after that, I received a thick envelope in the post. In it were two huge questionnaires for me to complete, and two huge questionnaires for the school to complete. I took the one for school in the next morning for Miss B and sat down that evening myself to go through the parents one. It took ages. There were loads of questions about behaviour, home life, school abilities, even asking about the type of delivery I’d had with Picklepot when he’d been born and whether there had been any issues during pregnancy or delivery. I’m not sure about the relevance of that but they apparently feel it has a bearing on things so I answered every question.

I posted back the forms a couple of days later, as despite their slowness to act upon any information it was made quite clear with the included letter that if you failed to get the forms back within 2 weeks of them being sent out then it would be presumed you no longer needed assistance and the whole process would need to be started again with GP referral. I’ve still not heard back from them, but it’s only been 2 weeks since I posted the forms back (1st class Royal Mail, sent direct from the post office to ensure no reason for it to claim to be lost in the post or delayed). I hope I hear from them soon though as things have got no better for Picklepot. He’s still highly emotional, bursting into tears or becoming very angry within a split second and raging with temper, throwing things, screaming, slamming doors, growling and being altogether a very unpredictable ball of emotion. One thing I discussed with Mrs D, the SENCO at school, was that potentially we could be heading for early onset of puberty, given that he is going to be 7 in August and is already wearing age 9-10 clothes he is very tall and she said its perfectly possible this may happen and the onset of hormones could be a reason for him being so emotional. Again though, it’s something the medical ‘experts’ need to be involved in with helping us out here, and helping Picklepot find a solution.

I’m hoping that the additional visual aids I’ve got him (the wristband and the communication flash cards) will help as it means he doesn’t have to verbalise when he’s becoming overwhelmed, but at the same time it would be helpful to be able to stop him becoming so overwhelmed so often. I feel I am constantly on his case asking him to correct behaviour, always telling him to stop that, come here, do as he is asked, don’t throw things, don’t scream in my face, don’t hit, and its tiring for everyone involved as well as repetitive.


It was a relief to go to our ASD Helping Hands group yesterday and be able to chat to some of the other mums there who are facing similar situations with their kids, and know that I could be honest and say how I felt and they understand, they don’t judge. Likewise, I don’t constantly have to be trying to keep Picklepot from behaving in ways other people see as unusual or disruptive because all of us are there for our kids who are on the spectrum so our normal is normal to them, too, and nobody looks at him differently or thinks he is being odd or tells him he is weird, so he can just get on and be himself and it’s all good. I’m so thankful for our little group, and for the friends I’ve made there.


Today we’re having a quiet day at home. Daddy P is at work, so the boys and I are chilling in our PJs. I’ve done loads of work, I’ve been running the washing machine, tumble drier and dishwasher since first thing this morning and I’ve been drinking lots of yummy coffee and doing some online shopping. In a little while I’ll go and start cooking our chicken for dinner but for now my Sunshineface has just woken from his nap so it’s time to go upstairs and sort him out and then we can do some tidying upstairs.

Sunday, 23 April 2017

The Easter Holidays - Broadland Sands



For the first week of the Easter holidays, I took some time off work and the boys and I went to Broadland Sands holiday park.

We’re return visitors there – we’re lucky enough that my parents own a caravan on the site, so we can use it whenever they’re not. They purchased their first caravan when I was pregnant with Picklepot, so we’ve been going there for almost 7 years.

Over time, the site has changed hands several times, the company who own it now are obviously a much bigger corporation than previous owners, and they’re bringing it all in line with their other sites, with the entertainment centre having had a huge renovation last year, mascots providing children’s entertainment in the clubhouse in the evenings and mascot merchandise available for sale in the site shop. They’ve rearranged a lot of the caravans, and are building additional areas for caravans and lodges to be placed.

On our most recent visit, I was surprised to see the outdoor pool open, as previously it was only open during the main 6 week summer holidays, and it was still rather chilly at the start of April to contemplate an outdoor swim, but plenty of people were enjoying it. The pool passes can be obtained from reception, and must be valid if you want to use the pool. There’s a larger one, complete with big waterslide, and a smaller one for the kids (warmer and more shallow) Attached to the pool area is changing rooms complete with toilet and shower facilities, so if you want you can get ready / get dressed after your swim there, but most people walk over to the pool and back to their caravan or lodge in their swimsuit and a towel along with flip flops! You’re on holiday after all!

There’s a childrens park area on site, which we always spend a lot of time visiting, now Sunshineface is mobile he was able to enjoy running around there and playing too, unfortunately a lot of older children are left unattended by the adults they’re on holiday with so there is a bit of an issue with the older ones trying to take over all the equipment and scare off the little ones, but if you’re there with your kids all the time like I am then you don’t tend to have an issue.

The site could do with having a good clean up. I’ve not noticed it so much in previous years but there was a lot of rubbish in the carpark area next to the tennis courts, battered old caravans and broken bits and bobs, and around the site was a lot of old decking piled up, rubbish left abandoned and things just seemed generally uncared for. There are a lot of signs stating that dogs must be kept on a lead – apparently a lot of people can’t read, as we saw many dogs not on leads, running wild and causing a nuisance, as well as messing and their owners not cleaning up after them. There are areas where the grass has been re-laid and not watered, leading to big brown patchwork sections of dead grass. Broken signage makes the site look uncared for and signs telling you what number caravans are where work best when they’re showing the correct numbers in the correct place. The site maps given out to holidaymakers are also incorrect, showing the wrong number caravans in the wrong places.

The boys and I spent a day at the local beach, which is Gorleston. It takes about 10 minutes to drive there from Broadland Sands. It’s a lovely sandy beach, there’s a good size carpark with slopes and steps leading down from there to the waterside, and a very nice café which is open most of the year. (In summer they get very busy) We got an ice cream from the ice cream van parked by the car park, we made sandcastles, we had a lovely day on the beach even if it was a bit chilly. If you’re in the area I highly recommend this beach.
Add caption


On our last night on the site, Picklepot wanted to go to the site restaurant for dinner. The kids meals were good - £4.50 for main meal, drink, and ice cream for afters. The meals were a generous portion – Picklepot had a cheeseburger and Sunshineface had chicken nuggets – and both boys meals came with a pile of chips. My meal wasn’t great. It cost £8.50 for spicy chicken burger and chips, I asked for it without coleslaw which I hate, and when it arrived there wasn’t even a bit of salad included. It was very basic fried chips and burger in a bun and looked like something I could have cooked myself in the caravan, not a meal I’d paid for, which was disappointing.

As we were finishing our meal the kids evening entertainment started so Picklepot was dancing and joining in with that, though Sunshineface found it all a bit much and wanted to stay away from the main stage where the characters were and the kids had all gathered to dance and scream. We didn’t stay long as it was very loud and lots of screaming, Picklepot found it a bit much after a short time too, so we headed back to the caravan. It was what I think of as typical holiday camp kids entertainment, though the meal was disappointing the venue has been done up very nicely and organised well.


I will continue to return to Broadland Sands but I don’t know that I’d get another meal in the restaurant unless they vastly improve the quality of the food, and I’d like to see the site cleaned up particularly once the summer season arrives. 

Top Line - Sunshineface at Gorleston Beach / on the caravan deck
Middle - Picklepot & I on the caravan deck / Me at Gorleston Beach / With Sunshineface at the clubhouse
Bottom - Picklepot at the site playground / On the clifftops / at Gorleston Beach
Background photo - Gorleston Beach

Sunday, 5 February 2017

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 … 

Wednesday, 18 January 2017

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.