Friday, 1 June 2018

ADHD Assessment – An Update




So, quick back story.

December 2015 Picklepot was officially diagnosed with ASD. Paediatrician refused to do ADHD assessment at that time as he said that all five year old children behaved the same way, despite evidence from Picklepot’s class teacher and school SENCO stating that Picklepot was more extreme than his peers and indications were that ADHD was a contributing factor. Paediatrician stated that he would have Picklepot back for review appointment in a year to do ADHD assessment.

January 2017 I contacted the Children’s Development Centre where the paediatrician was based, as I had not received an appointment letter for ADHD assessment in December 2016 as the paediatrician had advised we would. I was informed that the paediatrician had signed Picklepot out of their care at Easter 2016 before he had resigned from his position there. In order to get an ADHD assessment for Picklepot we would need a new referral. I was told either GP or school SENCO could do the referral. I asked for clarification three times that SENCO could definitely do it, as I had been told for ASD assessment it had to be GP referral and not SENCO. They assured me SENCO could definitely do it. I relayed this information to the school SENCO and she contacted the Children’s Development Centre herself to confirm she could do referral and also to find out who she needed to address it to. She was provided a name of a staff member, so she wrote to that staff member.

February 2017 the staff member at the CDC that the school SENCO had written to contacted her back to say that A) She couldn’t accept a referral from school SENCO, B) She wasn’t in charge of dealing with ADHD assessments and C) They no longer did ADHD assessments at the CDC. I took Picklepot to the GP for him to provide a referral instead.

In April 2017 we received forms. Lots and lots of forms. I had to fill in forms and I had to ask school SENCO and Picklepot’s teacher to fill in forms. They had to be completed and returned within 7 days of receiving them, which we did. In addition to this I was contacted by letter and asked to call the team to discuss my concerns with Picklepot / why I felt ADHD assessment was required.

I called the number, I discussed with the lady on the phone why I felt ADHD assessment was required, she asked me to put it in writing and provided an email address for me to write to. I dutifully sat down and wrote everything out and emailed it.

E Mails went back and forth from this email address for some weeks, asking for additional information, me asking when I was likely to hear something, and each time I got a polite reply back. Until one day I received a reply that said “you shouldn’t be using this email address it is not for parents it is for professionals only” so I replied and said, “You can see from the email trail that I have been communicating with the department for some time with this email address as advised to by staff member XXX when I spoke to her on the phone”. The reply back was, “You’ve been told wrong, don’t write to this email address again, we will not reply to you”. Rude? Yes. Something I have unfortunately come to expect from this complete joke of a system.

In August 2017 I received a letter confirming that the referral had gone from one department onto the actual ADHD team that would be able to provide the assessment. In October I received a letter from the ADHD team advising that Picklepot was on the waiting list for an appointment for assessment, but that due to how busy they were it could be some time before I received an appointment.

That brings us up to date. We’re now in June 2018, 16 months after the referral was originally made, and we still don’t have an appointment.

In the letter for the ADHD team it states that if you have any additional concerns before your appointment you should phone the number provided and speak with the duty person. I did that last week and asked to speak with the duty person and was told that until I have an appointment date they cannot help, and that someone else would phone me back urgently.

I’m not sure why their idea of urgent is so laid back because in my job if something is to be actioned urgently it is to be done within 24 business hours, however despite the fact that this department are dealing with the mental health of vulnerable children and their families, it took them an entire week before they phoned me back (yesterday)

The ADHD nurse I spoke with was lovely and sweet and very understanding, but ultimately she can’t do anything more to hurry things along. There is ONE SINGLE specialist in the whole of Norfolk and Suffolk who can provide assessment for ADHD and he has been working his way through an enormous back log of patients who were referred going back to before Picklepot was. For some time there was NO specialist who could provide assessment in these two counties, so any referrals were basically just on hold until he started the job, with no support or assistance for the children or their families. THANK YOU to the NHS cut backs in the region. If I could afford to go private I would, not because the NHS staff don’t work bloody hard to do what they do but simply because my son is struggling and the longer we wait the more he is struggling.

Picklepot is nearly 8 now. His social and communication skills are suffering. He’s having difficulties at school – his impulse control is non existant – he is acting out with throwing things, screaming, shouting, crying. Daily life is a struggle of trying to support him the best way we can and trying to encourage him, while at the same time trying to help him understand what is not acceptable and why. As much as I know for a great deal of it he can’t help the way he is behaving, it’s still important to me that he learns why he shouldn’t behave that way, because I cannot have him hitting / throwing things at people, it simply is not on.

The ADHD nurse was sympathetic and took note of what I was saying. She advised me about what I can do to ensure that when we DO finally get an appointment we have all the information we will need to hand, and no need to be sent away to get more information and then return for another appointment in another God-knows-how-long. Hopefully if we can get everything we need together then at our appointment it will be a nice simple assessment and diagnosis. (I know it’s in the post, it isn’t a question of IF he has ADHD but WHEN he is diagnosed)

Once the diagnosis is done, only then can we actually move forward in a helpful way. The diagnosis will allow the school to claim for more support for Picklepot, I can speak with the GP and the ADHD nurse about potentially having medication for Picklepot to help him concentrate.

It’s frustrating, it’s soul destroying, it’s hurtful to watch your child suffer the way Picklepot is suffering. He is trying to hard but it’s getting more and more difficult for him and he is struggling more and more. I know it isn’t the fault of the ADHD team, they’re doing the best they can – but it is the fault of cut backs and money saving exercises for mental health services in the local area and that is inexcuseable. My child has plenty of support from his family and friends, from his school and from our Helping Hands group, but many children don’t have that kind of support and they are suffering even more. It seems like they are the forgotten ones, they are shoved to the side and ignored and the situation is showing no signs of getting better.

So for now we continue to wait. I will speak to school SENCO when Picklepot goes back to school next week and get her to help put everything in place that the ADHD nurse has advised we will need, so we are all prepared for when the appointment eventually does happen. For now we continue to muddle along as best we can and hope that the damage it is doing to Picklepot’s mental health is something he can recover from.

The system is screwed up, and I am so tired of these constant battles to get anywhere, but as his mum I will continue jumping through whatever hoops they put in my way in order to get him the support he needs.



Sunday, 14 January 2018

Jan 2018




Well we’re officially well into 2018 now, Christmas seems like it was ages ago (even though we’ve STILL got our Christmas decorations up as Daddy P is in charge of putting them up and taking them down, and he hasn’t managed to get round to taking them down yet!)

Fortunately for us, Sunshineface got over his bought of chickenpox a couple of weeks before Christmas. While he was suffering with that, Daddy P, Picklepot and myself all had a horrible cold, but we were all feeling much better by the time 25th December rolled round.

Picklepot had fun at Beavers Christmas camp – the night they stayed over it snowed, so they got to have a run around in the snow on the Sunday morning before coming home, which added to the festive feeling: We arranged a Helping Hands Christmas party with a very special guest who came along to give the kids a little early present: I attended a work Christmas party at a hotel in Borehamwood with a movie character theme which was brilliant fun: There were meals out with friends, present buying and wrapping, not to mention Daddy P decorating the front room (yes, I know, epic timing lol and it still isn’t quite finished!)

While Picklepot has been, shall we say, much more challenging over the Christmas holidays, he made me very proud on Boxing Day as we spent the day over at Grandparents P home, with my SIL, BIL, nephew and niece. It makes for a crowded living room with all of us squeezed in there, plus presents as well, but Picklepot handled it brilliantly. He excused himself a few times to go off elsewhere to have some quiet time and play on his pad, he ate most of his Christmas dinner (encouragement from Grandma goes a long way!) and he managed to keep himself from becoming too overwhelmed. I was very proud of him – especially considering that after some of his meltdowns before that during Christmas break had me concerned that Boxing Day was going to be awful!

Both boys are very fortunate to have got so many lovely gifts, from Father Christmas and from us and our family and friends. We had a lovely time, it really was brilliant.

Unfortunately at some point during the Christmas fun my right hand became incredibly painful. I totally lost grip, I couldn’t move my thumb without it being excruciatingly painful and it made everything so awkward and difficult to do. I waited it out thinking that I’d sprained it or something silly, but instead of getting better it just got worse. Before I knew it the thumb was swollen around the base on my palm and the back of my hand and I was really struggling to do anything.

I had a call back from the GP surgery who had me in for an appointment that morning – they took some bloods, and the doctor examined me. She was concerned by the pain I had and I was sent for an X ray immediately as she was worried I had fractured my scaphoid bone.

The following Tuesday I spoke to the surgery again who confirmed my X ray had come back normal, but my blood tests showed that my red cells were enlarged. The marker for arthritis had shown up, so they wanted to take more blood for further tests. I went back and had more blood taken that morning; I then spoke to the doctor again on Friday. She advised that the second tests came back normal – if they’d shown another marker, alongside the arthritis marker, this would indicate lupus, but as they didn’t show this other marker we now go down the line of arthritis. She says this would cause the pain if I’m having a flare-up at the moment and the lack of mobility to my thumb. She has done an urgent referral to the rheumatology department at the local hospital, so currently I’m waiting to hear from them with an appointment. If their assistance doesn’t help within 10 weeks and I’m still in as much pain, I will have an MRI to double check that it is not a fractured scaphoid – sometimes the X ray doesn’t pick it up since it’s such a small bone – if it does turn out to be a fractured scaphoid I will either need a cast or surgery, depending if it’s aligned or not, to resolve it.

We also got a letter from the ADHD team in December, to tell us that they’re very busy and we’ll get an appointment as soon as possible. Considering we’ve been waiting since February 2017 I’m not holding my breath. I’ll get another appointment with the same GP we saw before and ask him to push for us. Picklepot is finding it harder and harder to focus and he’s beginning to really struggle. I don’t want him to get too far behind in school before it is looked into more. I would rather we get this in hand sooner than later. He’s going to be 8 this year – another 3 years and he’ll be off to high school, and we need his focus and concentration vastly improved before then.

Picklepot has been having further issues with the horrible child in his class that has been a bully since day 1 … I was furious over the Christmas holidays when I found a card from this child who had written “I hate you” on the back. I was so upset I emailed school immediately even though it was Christmas holidays, expressing  my absolute horror at finding this message and demanding that something is done about this child, who has had countless tellings off regarding their behaviour, particularly toward Picklepot, and yet continues to be just as nasty. The SENCO (currently acting Deputy Head) called me the day they went back to school and we discussed at length exactly who it was, what had happened, whether the child had been any better since their last telling off over their behaviour toward Picklepot, and going over what the school would be doing. This child has spat at Picklepot, tripped him over, pulled his hair, called him names, pushed him, taken food from him (his apple / packet of crisps mysteriously goes missing after the child has been nearby the lunch bags) he has had his coat removed from his locker and found on the floor in the boys toilets with the other child in the toilet at the time (coincidence?) The child has lied to get Picklepot in trouble, he has deliberately shut his hand in a classroom door, he makes up stories to tell other children and is generally making Picklepot very unhappy. I am giving it til the half term holidays then I will be in contact with the SENCO again to discuss improvements / issues.

Hope you all had a very Happy Christmas too, and that your 2018 brings you plenty of love, laughter and happiness.

-        Mummy P



Tuesday, 21 November 2017

21.11.17



I think the kids might be coming down with chicken pox, but I’m not sure, and I always thought it was one of those illnesses that came on and you knew for sure very quickly, but once again here’s my kids doing it differently!

Picklepot had a spot come up on Sunday, which was itchy and he picked at before telling us about it. We thought it was some kind of insect bite and used some insect bite cream on it to stop the itching.

On Monday after school he looked pale, he had a slight temperature, and he was quiet and not his usual bouncy self. He said he felt sick and he didn’t eat much dinner despite it being one of his favourite meals. He had a few spots on his back that looked like blisters.

This morning he came into me at 7am telling me he felt rough. His temperature was up slightly still, he looked pale and he had found some more spots. I was surprised – I had expected, if it was chicken pox – for him to be covered in spots by this morning, but he wasn’t. However they definitely look like chicken pox spots.

He stayed home from school. Throughout the day, more spots have appeared, but still he isn’t covered in them, though they are small blister like spots, like chicken pox spots. He seems to have felt more like himself as the day has gone on – his appetite is definitely back, and he has been gradually getting louder and more bouncy – but his temperature is still slightly up and with these spots slowly appearing I am fairly convinced he has chicken pox. It’s just a case of waiting to see what happens now.

Sunshineface has not been his usual happy self in general the last couple of days. He’s been very cuddly – he asks to get up for a cuddle one moment, and then when you pick him up he’s trying to get down again, and whinging the whole time. He hasn’t been eating a huge amount either, though he has been drinking a fair bit, and last night he was all snotty and bunged up overnight, coughing in his sleep and waking himself up because he was finding it difficult to breathe. I was expecting him to have a full on cold this morning but it seems to have gone – I am wondering if he is also coming down with chicken pox, though there is no sign of any spots at all on him.

Myself, I had chicken pox when I was 11, and while Daddy P can’t remember how old he was when he had chicken pox he has had it, so I’ll be quite happy for both boys to have it now and get it over and done with. Certainly I wouldn’t want them to have it when they’re too much older. I’m shocked that given how many of his friends have had chicken pox over the years that Picklepot has gone without catching it up to now. If it is chicken pox, it’s kind of good timing, as Daddy P is off work next week so he’ll be around to help out with the sickly boys, and it’s far enough in advance of Christmas that they should be fully recovered by then.


For now it’s a case of waiting to see how it develops. 

Saturday, 18 November 2017

The Overload of a Busy Day




We had a great day today.

This morning was our Helping Hands ASD Family Support Group. One of the mums who comes brought along her dad, who does photography. He brought along a background, some props, and proper lights. Some of us wore Christmas jumpers, some of the kids wore Christmas jumpers, we had lots of photographs taken and it was a much more relaxed environment than taking the kids to a photography studio. They had fun, they messed about, they were relaxed and enjoying themselves and we got photos taken. I’m hoping we can use them for Christmas cards / gifts. Last year we were let down massively last-minute by the photographer I’d booked and I wasn’t able to get professional photos done of the boys before Christmas. I’m really looking forward to seeing how they came out.

After group, we came home and had lunch, and after that Picklepot’s girlfriend came round for a play date. They were noisy, they were silly, they made a big mess, they had fun, they enjoyed themselves. It kept Picklepot entertained – without him being glued to the TV, playing computer games or annoying his little brother all afternoon. Daddy P was off work, so he kept Sunshineface happy while I got on with my work. It was all good.

I did the kids dinner around 6 and then Picklepot’s girlfriend was picked up around half past. Picklepot had his afters, he had his usual milkshake and cookie, and everything seemed fine. We watched some cartoons and then went upstairs to put the boys to bed.

At this point it all went wrong. Picklepot had already been asked to tidy up his room. When we got upstairs he started messing around and not tidying up his room. Things quickly escalated between him and Daddy P and got a bit loud and a bit crazy and ended up with tears and screams of “I hate you” and Picklepot coming to tell me how mean Daddy was, and when I sided with Daddy P he started shouting at me. After about half an hour of that he still hadn’t got any further with tidying his room, so I suggested that maybe we should have a game. I suggested that we should see who could pick up the stuff quicker – daddy with the bin bag to throw things away or Picklepot to put things away. Picklepot really wasn’t happy about that and the meltdown continued but he did manage to sort things out.

He really was overtired and I should have seen it coming considering the busy day he had, so I did kick myself that I didn’t, so tomorrow we’re just having a quiet day at home and I’m glad I planned it that way. I still have some work hours to do but not that many, and we can chill in our PJs and watch TV and cuddle and generally just have a day “off”. I forget sometimes that he needs that, because he does so well with coping most of the time. He’s had a full on week at school, Children In Need day on Friday which meant wearing PJs to school (which he was thrilled about) and then the photos today at group and having his girlfriend round to play, it was all too much and I’m sorry it ended in such an awful meltdown tonight. I wish I had realised sooner that it was too much for him.

Live and learn, right. Tomorrow is another day.

Friday, 10 November 2017

10.11.17



This week, Daddy P has been off work. It’s been nice having him around to help me with the day-to-day juggling act of taking care of the boys, the housework and my work! We’ve taken it in turns to do the school run, taken it in turns to get up in the night when one of the boys has woken up, and taken it in turns to cook the evening meal.

On Sunday, it was our 11th wedding anniversary. We had a day at home with the boys, then went with Grandad P to a local fireworks display & funfair. It was Sunshineface’s first experience close up with fireworks, and he seemed pretty impressed, though there were some points he kept saying “No, daddy!” and turning away from the display, but I couldn’t work out if it was certain noises he didn’t like, or something else, as it seemed to vary when he was saying no. We bumped into Picklepot’s girlfriend and her mum so we went round the funfair with them and she and Picklepot enjoyed going on some of the rides together.

On Tuesday after school we had parents evening for Picklepot. We had a good chat with his Yr 3 teacher, Mr A, and we found that Picklepot is streets ahead for his maths work – Mr A is going to start setting him Yr 4 work as he is finding the Yr 3 stuff boring – for his English and his Reading he is being quite lazy and although Mr A knows he is capable, he is not showing his skills and so he is beginning to drop from ‘exceeding expectation’ to ‘average expectation’. It’s just trying to get him to see the point in doing a lot of it – He knows he can read well, so he sees no benefit in ‘proving it’ to anyone else; in the same way he knows he can write well, and has excellent comprehension skills, so again he sees no point in ‘proving’ himself. I’ve explained to him that for school, they need him to ‘prove’ it, so they can track his progress.

Mr A said he is a very popular member of the class – especially with the girls! – and that he has got a lot better working with others in a group when needed, though he is still happiest working alone, and Mr A said he does tend to ‘cherry pick’ a group that he knows Picklepot will work best with. His lack of concentration, his ability to daydream the time away, his motivation being hand-in-hand with approaching loss of playtime, his easy distraction, is all part and parcel of Picklepot and Mr A is sympathetic to that, so he is working out ways of ‘dangling the carrot’ so to speak, in order to motivate Picklepot by reward for doing well, rather than punishment for not finishing things.

Year 3 started swimming lessons last Friday, and I was very apprehensive. Whenever we’ve been swimming before, Picklepot has been dead keen on the idea and as soon as we’ve got into the pool he’s attached to me like a limpet and won’t let go. It can get quite awkward as he’s so tall now and there’s me struggling to move around with this child whose arms are tightly wrapped around my neck, freaking out because he thinks he’s going to drown if he loosens his grip on me at all. He’s also always complained about how cold he gets when we’re swimming, and then once he’s cold he won’t move at all, so once out of the pool he’ll just stand like a statue, wrapped in a towel, complaining how cold he is, and not getting himself dry and dressed. All in all, I thought the school swimming lessons could be pretty disasterous!

However, first lesson was last Friday, and Picklepot sprang out of school full of enthusiasm. He said he’d absolutely loved it, really enjoyed it, couldn’t wait to go again etc. Last night he asked me to include his goggles in his swimming bag as he wanted to try putting his face underwater this week. Last night at bedtime I was getting annoyed with him for being so slow at getting ready for bed, so I kept on at him to hurry up, and he kept moaning he didn’t feel well. The moment I said, Well, if you’re not well you can’t go to school tomorrow, and if you can’t go to school then you can’t go swimming! And suddenly, he was feeling much better … 😉

This weekend both myself and Daddy P are off work, so we’re planning a nice lazy weekend with lots of family time. My mum might be coming to visit on Saturday, it’s been a few weeks since we last saw her so it will be good to catch up if she can visit, but it depends on her new job at the moment as she might end up working.

The week has once again gone past in a blink and I don’t know how it’s Friday again already! But I am definitely ready for this weekend!

Friday, 3 November 2017

A Quick Update



The half term holiday seemed to disappear in a flash! I was working, so we didn’t get chance to go out much, but on the Saturday we held our ASD Helping Hands group Halloween Party! It was a great success with all the kids in fancy dress (and lots of the adults, too!) Plenty of party food was consumed, as well as lots of Halloween cakes and sweets, and we played some games as well. Everyone seemed to have a good time, now it’s on to organising the Christmas party!

School started again on Monday, and on Tuesday morning when I took Picklepot in I asked him not to go round the side bit of the playground where the trouble always seems to happen with the big group of kids playing that horrible game known as “Bulldogs” which ends in someone getting pushed to the floor and hit / kicked (the last week of last half term one kid had his trousers pulled down as well and everyone was laughing at him) The school have asked the kids not to go round that part of the playground but of course kids like to do what they’re told not to. Anyway so I said to Picklepot don’t go down that bit, he said OK and stayed at the edge, then a group of older kids ran over to him and punched him! He was very shaken, came over to me and explained what had happened, and I had a chat with the teacher who’d come out to blow the whistle and get the kids into school for the start of the day. He said he’d go round and have another chat with everyone but as Picklepot doesn’t know the names of the kids who assaulted him they can’t punish those children specifically.

This weekend Daddy P is on leave from work, we have our ASD Helping Hands group on Saturday morning and then a firework display on Sunday evening which we’re taking both the boys to. It will be the first time Sunshineface has gone to a firework display so I hope he doesn’t get too scared by the noise. We’re taking Grandad P as well, since we know he enjoys a good funfair with the kids!

Sunday, 22 October 2017

It's The Half Term Holidays!



The last week of school seemed to go without any issues for Picklepot, though there were two incidents I heard about from other mums who have kids in his class which concerned me.

Both times it was due to the kids playing a game called Bulldog before school started, in a corner of the playground that is quite hidden. The first incident was a boy from the 6th year getting pushed to the floor and getting beaten up by the surrounding crowd, fortunately he got away without being too seriously injured and his mum was able to calm him down and go and speak with the staff in the office. He’s now able to go into school through the office each day, to avoid another incident in the playground. The mum was informed that the kids shouldn’t be any kids playing in that corner of the playground at all, and that a teacher should be in the playground monitoring the kids from 8.30am to ensure this kind of thing didn’t happen. A couple of days later another kid was pushed to the floor in a game of Bulldog in the same corner of the playground; he had his trousers pulled down and the surrounding crowd were laughing at him. His mum, understandably, was absolutely fuming (I would have gone mad if it had been Picklepot in that situation) This happened after 8.30am, but there was no sign of a teacher in the playground monitoring the kids, and again they were in the corner they shouldn’t have been in. This incident prompted one of the staff going round to every classroom that day, telling them that the game Bulldog was banned, and that the corner of the playground was off limits before school. Whether or not that is enforced or will deter the children from doing it I don’t know yet, but I for one am keeping an eye on that corner and will be over there like a shot if I see it going on again. I wonder how kids can be so mean to one another – it’s always been the same, I remember it at my school (though not to that extent in primary school) There’s a couple of names that keep coming up time after time with issues, one of which was involved in both the incidents in the playground during the game of Bulldog last week, and that name is also the same child who has been causing Picklepot issues and slammed his hand in the door the other day, so whether his parents will actually take notice of the school telling them again that he is in trouble I don’t know. He struts around the school with this smirk on his face, he is a proper little nasty piece of work, and while I know he has a lot of issues himself and a lot going on in his young life I don’t believe anything gives him an excuse to behave like a thug. I am keeping an extra close eye on him, and his siblings. (He has an older sibling that Picklepot thinks is his friend, but basically they wind him up at lunchtime until he gets in trouble for misbehaving because they’re telling him to do stuff, hiding his lunch, holding his property above their head and making him jump to get it, and then he gets in trouble for fooling around)

The school was closed on Friday for an inset day, so Picklepot came to Disco Duck dance class with Sunshineface and myself, and he seemed to really enjoy that. Sunshineface got a certificate to say he completed a full half-term of classes. Then on Saturday morning I dropped Picklepot off at the Beaver hut for Roald Dahl themed camp weekend. He was really looking forward to that, so I hope he’s had fun. I pick him up in a couple of hours.


Next week I’ll be working so we can’t do much, but on Monday while I’m in the office there’s an exhibition about Magical Creatures (based on the Harry Potter books) at the local library so I’ve told Daddy P he should take the boys to that (apparently there will be real owls to meet) and on Thursday there’s a new parent & child group starting off at a local tea room so I’m planning on going along to that as well. I’m hoping to get the boys out to visit some friends too, so hopefully they won’t get too bored.