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 (1^st 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.

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.

Dan TDM On Tour

J has been a massive fan of YouTuber DanTDM for a long time. He got into watching the videos at first because Dan did a lot of Minecraft based videos, and I was happy for him to watch them as Dan keeps it ‘clean’ with his language and there are always warnings ahead of the video playing if it’s going to be something which will be inappropriate for younger viewers, such as ‘horror maps’ which I don’t let J watch as he tends to have nightmares afterwards.

You may know that one of the characteristics of Asperger Syndrome is ‘obsessive’ behaviour, which I think is a bit of a negative way of saying it, I prefer to say J has ‘passions’ rather than ‘obsessions’. When he is interested in something he likes to know everything to know about it, he immerses himself in it and he absorbs a wealth of information on the subject. DanTDM is one of his passions, I would go so far as saying that he is a hero of J’s. Nine times out of ten if J is watching a YouTube video, it will be a DanTDM video, and he refers to himself as “Team TDM” and his favourite colour is diamond blue.

Some months ago, I saw DanTDM post on his Facebook page about doing a tour of the UK with a specially written show. I thought it would be a wonderful thing to take J along to, so I was thrilled to discover that the show was coming to the Ipswich Regent theatre on August 13^th, exactly a week after J’s sixth birthday. What an ideal birthday gift! To top it off, there would be a limited number of special “Diamond” tickets available – you could upgrade your standard ticket to a VIP one, and have the added experience of a meet & greet with DanTDM himself, a photo taken with him, and a special goodie bag of ‘exclusive DanTDM goodies’. It was expensive, but with the help of my parents and Daddy P’s parents we got ourselves three tickets for the show, and upgraded J’s to a Diamond VIP ticket.

We decided not to tell J that we were going to the show until his birthday. This was to prevent him becoming too worked up about it by knowing about it too far in advance, so we kept it a secret and after his party last Sunday once everyone else had left and it was just our family left, I told J about his main present, explaining that it wasn’t something we could wrap, so I’d made a poster to show him with the information on it. He didn’t seem very excited at the time, but he didn’t really take in what it meant at the time. Later that evening he asked me what a theatre show was, so I explained we would go and see DanTDM on stage doing a performance – he thought it would be like going to the cinema and watching a normal YouTube video on a big screen, so the thought of seeing the actual DanTDM in real life started getting J excited about the idea.

As the week progressed he was asking us things about the show, details like what the performance would be about (which we had to explain we didn’t know, as we hadn’t seen it and it was being kept secret until you went to see the show) He refused to watch the teaser trailer that DanTDM posted on his YouTube page as he said he didn’t want to ruin the surprise. I tried to prepare him for it as best I could, explaining it would be a long, busy day, that there would be lots of other boys and girls there and it would be crowded, noisy, that it would be dark in the theatre with bright lights on the stage that would probably flash around the crowd at times. It’s difficult to prepare any child for a new experience like that, but even more so when your child is on the autistic spectrum and is very sensitive to noise and lights.

On Thursday evening, we told him that we had upgraded his ticket to a Diamond VIP ticket, and explained what that meant. As the reality dawned on him that he was actually going to get a chance to MEET his hero, and have a photo taken with him, he became even more excited.

On Saturday morning, due to the VIP experience, we had to set out early to make it to Ipswich on time. J was up at 7.30 and making a picture to give to DanTDM when he met him. It took a little while of persuading him to get washed and dressed, because we kept saying that the show wouldn’t wait and if we weren’t there on time for the meet & greet he wouldn’t get the chance. We were ready and finally left at 9am.

We arrived at the car park next to the Ipswich Regent theatre just before 10am, and from there we walked to the Corn Exchange for the meet & greet. A long line of people was already waiting outside, so we joined the line and waited. At this point we had our first hiccup of the day, because waiting in a line is boring as we all know, and J hadn’t brought his stress ball to concentrate his energy on when he became restless, so he began getting quite upset and agitated. He didn’t want to hold our hands, or stand with us, he kept dancing about and getting quite stressed. Other people in the queue started staring, and while I am now beyond the point of caring about this, J is now at an age where is very aware of how others are reacting to him, so once he noticed the staring he became more upset. In the end Daddy P took him off for a walk while I waited in line, to calm him down. Once the line started moving again as people started being let in, Daddy P and J returned to me and we played “I Spy” as we shuffled towards the door.

We only upgraded J’s ticket to the Diamond VIP version, and as a child under 14 he had to have one adult with him, so at the door Daddy P had to say goodbye to us and just J and I made our way into the Corn Exchange.

It was well organised at this point. Our tickets were checked at the door, then we gave our names to a lady with a clipboard who checked us off and we got a raffle ticket, the number of which was our turn to go and have the meet & greet with DanTDM and have the photo taken. After this we went up the stairs to the merchandise table, and J chose a lanyard with the TDMTour image on one side, and a space for Dan to autograph on the other side. We went into the hall, and J chose seats to one side of the hall, where he could clearly see the big screen TV that was set up showing DanTDM YouTube videos.

There was a bit of a wait while everyone else came into the hall, and once everyone was in and seated they greeted us all and explained what was going to happen. Then DanTDM himself came out onto stage with his familiar “Hi, everyone” shout, which is how he starts all his YouTube videos, and the crowd went wild. J was sitting next to me in stunned silence, his eyes huge, and glued onto the figure on the stage. I must admit it was surreal even to me that this familiar person, whose voice I hear daily, was suddenly standing in the same room, so goodness knows how crazy that must have seemed to J.

Then Dan took his seat on the stage, within the prop used for the photos, and one of the staff announced that everyone with a raffle ticket number between 1 and 20 was to go and line up beside the stage. Our ticket number was 72 so I knew we would have a wait before it was our turn, so I concentrated on trying to ensure that J didn’t get bored while we waited. We went to the loo (I know that seems a bit weird, but I needed it by that point and it meant we spent about five minutes walking around getting to the loo, doing what we needed, and walking back from the loo again) By the time we were back in the hall, numbers 1-20 were about halfway through, so then we sat looking around the hall and I was pointing out some of the features like the circle seats at the back, the old light fittings in the big dome on the ceiling, we looked at the other people there and we admired various different DanTDM / Minecraft / various gaming t shirts, and hoodies, we spotted all the people with blue hair, those who had modelled their entire look from hairstyle to skinny jeans on DanTDM, we spotted people carrying pug soft toys (Dan’s favourite dogs), those with the official tour baseball caps on sale, those with lanyards the same as J’s, and J of course watched the video screen.

Numbers 21-40 went up to wait in line and J asked again what number we were, so then we worked out how long we had before it would be our turn to go and line up. At this point he started getting a bit anxious because where we were sitting was right by where the line was for going onto the stage, and with the full 20 people in the line, plus their parents, for their photos, they ended up blocking the view from our seats to the TV screen, so J didn’t have that to concentrate on, and he started noticing how many people there were around him, how noisy it was in the hall, and after rooting through my handbag for something to distract him the only thing I could find was a tin of mints, so he had a mint and then decided he wanted to lie on the floor under the chairs to feel safe.

People don't often see this side of J and I debated for a long time whether or not to share this photo. But this is his life. This is what he did in a packed room full of people to feel more secure and calm about the situation.

To give them their credit, I didn’t notice anyone in the hall bat an eyelid about this behaviour. If they did, they were discreet about it. While it is totally normal for me to see him doing things like this, and I could understand why he would find the cool, smooth wooden floor calming, in situations like that you normally find at least one person who gives him a funny look or stares at us like they can’t believe I am allowing him to do whatever it is he is doing, but this group of people didn’t make a fuss at all. Even the usher from the theatre who was in charge of the line of people waiting for their photo to be taken just glanced over at him and smiled at me.

By the time our group was called, J was more than ready for things to happen. If we’d not been in that group I don’t know how I’d have kept him entertained any longer. I may have messaged Daddy P and asked him to get us some lunch and meet him at the door to collect it, but as it was we just about managed to last and when numbers 61-80 were called J shot out from under the row of seats and galloped to the lady checking the numbered tickets and into the queue. We were behind another young lad and his mum who had a picture for Dan, and in front of them was a lad with his mum who had a knitted DanTDM toy that his grandma had made the night before, which impressed J no end as Grandma P does a lot of knitting so he had the idea of asking her to make him a DanTDM next time he sees her. They were both very nice and we chatted while we waited, and behind us was another family with two boys, plus mum and dad, and one of the boys was antsy about queuing as well so his mum took him to sit in front of the TV screen beside the queue, and J ended up sitting on the floor with them while I stood in line til it was almost our turn. The guy at the bottom of the stage steps was lovely and chatted to J and myself while we waited, and then when we were called up the stairs to stand at the side of the stage ready to go and have J’s photo taken he was vibrating with excitement and the guy realised that and was talking to him as well.

At last, it was J’s turn. He skipped across the stage to Dan full of confidence, and when Dan said hello he was laughing and said hello, and the pair of them sat and had a chat – J told Dan all about the picture he’d drawn so they had a chat about that and Dan complimented him on what a good picture it was, and thanked him for making the effort, then he signed the lanyard, and they had their photo taken and finally J got a high five from Dan and we left the stage. The whole thing had taken only a couple of minutes but J was so excited and so happy. Immediately after we got off the stage, we went to the lady in charge of the printer, and J’s photo rolled out of the printer as we stood there and was put in a special DanTDM Tour card. We went to the table where the goodie bags were set up and J gave his name, received his goodie bag and then it was time for us to head back outside and meet up with Daddy P.

One very happy little boy finally meeting his idol!

To be honest, I had hoped for the price we paid, the goodie bags would contain more goodies. Inside was a special edition DanTDM Tour t shirt (we’d emailed weeks in advance for what size would be required), a small packet of jelly beans and a bag of flavoured popcorn. The bag itself is a sport-bag style with the DanTDM logo on it so that can be used again, but after all the hype about the “special goodies” and the promise of “a limited edition t shirt and much more included” I had been hoping for a bit more. Luckily J wasn’t disappointed and was still skipping about because he’d actually met and spoken with DanTDM.

We were out of the Corn Exchange around midday, which meant we had an hour and a half until the show started down the road at the Regent Theatre. We walked back to the car and popped into McDonalds on the way to pick up some lunch, which we took back to the car to eat – though disappointingly J’s Happy Meal was missing the drink and the sauce which caused a bit of a hiccup as he started getting really upset about it until Daddy P shared his milkshake. We chose to eat in the car as McDonalds itself was so packed and noisy that even the brief time we were in there was an issue for J – he was spinning, trying to run away to find somewhere to hide, wanting to lie on the floor (not practical in a crowded McDonalds!) and was generally becoming quite a handful, so we took our food and went to sit in the car where it was familiar, and peaceful.

After eating lunch we headed to the theatre, and to be honest this is the bit of the day that was the most stressful. Although everything else up to that point had been busy and noisy, it had at least been well organised and because we had been told what was happening we could guide J and as long as he knows what is going on and what is happening next he copes well even in new situations. This wasn’t well organised and we didn’t know what was happening.

There was a massive line from the doors of the theatre down the road. So naturally we joined the end of it, thinking this is the line to get in. Ten minutes later, a guy selling programmes for the show came down the line and announced, “This is the line for the merchandise, so if you don’t want merchandise and just want to go straight in, you don’t need to be lined up here”. Well thanks for that, man selling programmes, but why wasn’t that clearly marked by some rope and a sign of some sort? So half of us who’d been patiently standing in the wrong queue then went around the line and through the doors into the foyer of the theatre.

In the foyer it was packed. There were people everywhere, it was noisy, it was confusing, and it was hot. We had tickets for Circle seats, and the doorway to a staircase marked “Circle” had a line coming out of it that went back out of the theatre doors, that seemed to include people waiting at the bar to buy drinks. We really didn’t know where we were meant to be going or who to queue up behind, so we kind of stood in amongst this mass of people to wait. Again, no guidance what was going on, who was waiting for what, a lady did come and ask us all whether we had Circle seats as she didn’t want Stall seat people waiting in the wrong place, but everyone did (apart from those who were queuing for the bar) but other than that it was very disorganised. J became agitated, we were in a massive crowd of noisy people and it was hot and sweaty, and he wanted to find somewhere quiet to relax but we had nowhere to go, it seemed ridiculous that they were letting people into the foyer and not letting us into the theatre itself because we just ended up getting more and more packed in and getting hotter and hotter, it was getting noisier and noisier … The inevitable happened, J started spinning and covered his ears and started walking backwards, which meant he was bumping into people, he didn’t want to hold hands with me or Daddy P and instead wanted to run around Daddy P in circles which was impractical because of how crowded it was, but the more we tried to explain the more distressed he became. Daddy P gave him the DanTDM Tour programme to look through to distract him, but he wanted to lie on the floor of the foyer to read it, which was impractical due to the crowd of people walking about.

I was on the verge of marching over to the bar and demanding that they let us into a quiet room for J to calm down as I could see he was teetering on the edge of having a meltdown due to this huge sensory overload, but fortunately at that point they started letting people into the theatre, and the line started shuffling up the stairs. J was still not calm and it was difficult getting him to walk slowly behind the group of people in the queue ahead of us, but we managed well until we got to the bottom of the stairs, when a couple came down the stairs against the rest of the crowd of people. Of course everyone else shuffled to the side to get out of their way but J had his hands over his ears and was staring at his feet so he didn’t realise the woman was coming straight toward him, and when I tried to tap his shoulder to get his attention to get him to move he freaked and stepped sideways, even more in the path of this woman – so she barged past him, a six year old kid with his hands over his ears looking at his feet in amongst this noisy, hot crowd of people, and she just marched by knocking him sideways into me as she did so. Of course Mama Bear raised her head and I growled at this woman about knocking my child out of the way and she could have said excuse me and how rude of her to be so obnoxious to such a small child, but of course she ignored me and instead her husband looked suitably ashamed as he scuttled along behind her.

Fortunately the line was moving quite rapidly by that point, so we continued to go upstairs and as we got closer to the door into the theatre J began to visibly relax. As soon as we were in and found our seats he was staring at the stage excitedly and bouncing in his chair, completely at ease again. It was darker than it had been in the foyer though the lights hadn’t gone down yet for the performance, it was noisy with the chatter of the audience filing in, but it was cool and now we were in the theatre and he could see the stage, J focused on that to help keep him calm.

Once again, the familiar “Hi, everyone!” rang out over the speakers as Dan came on stage and the whole place erupted – but instead of being bothered by the noise, this time J was well and truly part of it and he screamed, clapped, stamped his feet, cheered and booed his way through the show, completely immersed in it all. He was completely and utterly under the spell of DanTDM and all that was going on during the show, and he loved every minute of it.

I took the opportunity during the second half to pop out and visit the ladies room without the queue of hundreds, and while I was out I stopped at the merchandise table, which was also free of the crowd, and picked up a TeamTDM armband and an official TDMTour t shirt (J had seen other kids wearing them and announced they were cool and he liked them – since he hadn’t actually asked for anything from the merchandise stands and had coped so admirably with everything that had been going on, I thought it would be a nice additional treat to compliment the less than wonderful goodie bag)

After the show, we exited the theatre from the circle seats via a side door that lead us straight outside rather than going through the foyer. We got back to the car and took a moment to have a drink before we set off for home. J sat in the back talking about the show until we started off for home – then he was very quiet. It’s normal for him to chat constantly in the car, but if he’s particularly tired he will be absolutely silent, and that was how he was yesterday on the way home (with the exception of telling me as I did 60mph down the Bury Road from Ipswich that he urgently needed a wee … thank goodness I am prepared for events like that, so we pulled over and he used the Coke bottle from the boot!) After that he was quiet again til we got home – he was his usual bouncy self at home, chatting away and playing with a variety of toys for 30 seconds each before they were abandoned in favour of something different – I did his dinner and Daddy P took Baby A up to bed, then I took J up to bed at 8pm. I had been expecting him to still be very hyped following the day, but instead he collapsed in bed without argument and after I read him a couple of chapters of James and the Giant Peach he wanted to listen to his BFG audio book until he fell asleep – which was only a few minutes later.

As much as he enjoyed the experience on the whole, I think if I were to take him to an event like that again I would make sure we don’t leave the stress ball at home (I only had Chloe the cat in my bag and he announced after trying to use her to calm down that she just didn’t help) I would make sure that I had more to entertain him in the long queue, as I was woefully unprepared for the amount of waiting that had to be done, though it would have been hard to do much in the queue perhaps a pad of paper and a pencil so he could do some drawings while we waited would have helped. Also I would have taken his noise reducing headphones with us, except they have mysteriously gone missing so I am going to need to invest in another pair since they were so useful.

The confusion at the theatre I hope they will consider looking into for future performances to prevent children like J becoming overwhelmed, because he was so close to meltdown and if he had gone into one at that point I would have had to take him to a quiet room to calm down or else taken him out of the theatre and back to the car which would have been next to impossible once he was in full blown meltdown. I think it would have been better controlled with clearer signage outside for the merchandise line; not allowing so many people into the foyer until they were at the point of letting people into the theatre so it didn’t get so packed; perhaps an idea could be for them to adopt a similar idea to Manchester airport, which offers a ‘Blue Band’ option when you book your flights, which alert staff to invisible issues such as autism and allows autistic customers and their families to go through the airport without queuing and to be provided with a quieter space for calming down when necessary (Personally though I think most places like the theatre, all airports, train stations, bus stations etc should adopt this idea as it’s not easy getting a child like J out and about for events without meltdowns due to his sensory overload in those situations).

Altogether it was a very enjoyable day and I am very pleased we managed to get tickets and, more importantly, that we were able to upgrade J’s ticket to a Diamond VIP one. It really made the day extra special for him to meet his idol. It was an exhausting day for us all, but it is one that we will all remember for a very long time.

“Mummy, It’s Too Loud”

08/07/15

From a young age, J has often complained about certain noises. For as long as I can remember I’ve had to be careful about hand driers in public toilets – even someone else using them can send him screaming off into a corner holding his ears and it can take him some time to calm down again afterwards. He went through a phase of hating the hairdryer and the hoover at home – now he will tolerate the hoover as long as he has warning of me preparing to use it, and on the understanding I don’t use it in the same room he’s in; with the hairdryer he is now happy to let me use it on him, but again it’s only on his terms – if he wants me to use it to dry his hair, and we have to count “1,2,3” before I switch it on and if at any point during the process he asks me to turn it off I have to do so quickly, or else he’ll freak out.

Other triggers I’ve found is the noise of a busy main road – the cars etc rushing back and forth is OK for a while, but quickly overwhelms him if it’s constant; the noise of helicopters is fascinating for him for a short time, but again it will quickly get too much. Sometimes, crowds of people is too much for him to cope with – other times, he’ll happily deal with it. I’ve found a lot of it depends on how tired he is, how much he’s already dealt with over the day, and also what his focus is – when we’re in McDonalds for instance he’ll deal with the noise of people talking, the beeping of the tils and the cooking equipment, the noise of the speakers for the drive-thru and the music playing, because he is focused intently on his Happy Meal, his toy, and his balloon – but if I take him into a ‘normal’ restaurant with no distraction, for instance when we’re seated and waiting for our meal to arrive, or in that aching long gap between main course and dessert, then the noises of his surroundings become too much and he’ll hide under the table covering his ears, or his go-to option tends to be to run, and try to escape the situation.

Sometimes, I find it’s not worth getting him worked up and upset and I will avoid the situation to avoid him having a rough time. Other times, it’s an important situation, such as a birthday meal or other special event, and we’ll go and deal with it but it takes careful planning – I’m never without some Lego to keep him amused, or a book we can read together, even a small packet of crayons or pencils and a colouring book to pass the time. When sitting somewhere I’ll try to sit us in a corner if its possible, and let him sit with his back to the wall and in the corner seat – not only does this seem to help make him feel more comfortable, but it slows down his progress if he does default to the ‘run’ setting, which can buy me valuable seconds to get up and catch up with him myself if necessary.

One thing I wasn’t aware of was how common this hyper sensitivity is amongst people on the autistic spectrum. I found this article enlightening and realised that once again J aligns with ‘typical’ characteristics of ASD.

A few weeks ago, Grandad P asked J if he would like to attend Duxford air show with him, and Daddy P. Initially J wasn’t too keen on the idea – it’s a totally new concept to him, he’s never been to an air show before as I was aware that the huge crowd and loud noises would be overwhelming to him – but he’s almost five now, and Daddy P went to air shows a lot with his dad as a child, as I did with my grandad, and it’s something we both associate with happy childhood memories, something I don’t want to deny J of. So we spoke about it some more, Grandad P showed J some models of aircraft that will be at the show and explained a bit more about it, and J liked the sound of it so by the end of the afternoon he was excited at the prospect of a day out with daddy and grandad.

My concern remained the large crowd and the noise. After all, if it was billed as a fun day out the last thing I wanted was J to become overwhelmed and either have a meltdown about it or run off, both of which would be bound to put a dampener on the day. I spoke with Daddy P about the idea of some ear defenders, and he agreed that sounded like a very good plan.

I ordered these from E Bay, and they arrived within a few days of placing the order. They’re a bright, funky colour, they’re sturdy and appear to be designed with comfort and practicality in mind. I was very pleased when they arrived.

So far J has only tried them on in the house, and he said they made everything sound funny – well I suppose they would, as they minimise sound so in an already quiet environment it must be a bit disorientating having sound minimised even more. I’ve explained to him though that he’ll take them with him when he goes to the air show, and if he feels that the noise is getting a bit much, and he’s getting a bit overwhelmed, he needs to tell daddy or grandad and they can help him put his ear defenders on to help him have a bit of peace and quiet without having to leave the situation completely, because I want him to see the aircraft in flight and enjoy the show, to not miss out on the point of the air show because of the noise that comes with it. The fact that the pilots will also be wearing ear defenders is something I’m hoping will encourage him to put them on, as it won’t seem out of place to be wearing them if he sees other people wearing them too.

The air show is this weekend, so I’ll let you know next week how he gets on!

Peace & Love

Mummy P

xxxx

“Toothbrush Tantrums & Bathtime Blues”

01.07.2015

Ever since he was little, we’ve never really had much of an issue with J brushing his teeth or having a bath or shower. He went through a phase about a year or so ago of not being keen to have a bath, but at the suggestion of my friend @TheLittleBoysWhoWaited we introduced glo sticks to the bath as a reward and because he adores glo sticks this totally reversed the situation – it ended up being difficult to get him out of the bath!

For the last couple of months though, for no apparent reason, J has had an aversion to brushing his teeth and having a bath or shower. Yesterday was a prime example – he was fabulous all day, from getting dressed in the morning and walking to school, all the way through beyond dinnertime. He went upstairs with Daddy P at 8pm for bedtime without any fuss. He got into his PJs. He walked into the bathroom, and took hold of his toothbrush. And there the argument started.

He brushed his teeth for perhaps 10 seconds before stopping. Daddy P asked him to carry on. “Please will you help me, daddy” was the plead. Daddy P said “You carry on for a little longer, and I’ll check them when you’re finished” J wasn’t having any of it. He repeated his plea again and again and again, becoming louder, becoming more upset, begging Daddy P to help him.

Now, this is where we hit a stumbling block. Daddy P will continue repeating himself as much as J is, gradually getting louder and more upset, and the two of them end up getting upset and frustrated and saying the same thing over and over again. It doesn’t resolve anything and it upsets me to hear them go at it like that. Eventually Daddy P walked away and J was trying to bargain with him “If you come back, I’ll do it” and Daddy P was saying “No, you haven’t done it when I’ve asked you all the other times, why would I believe you now?” I went to the bathroom and prevented J from getting out of it, explained calmly that he needed to carry on brushing his teeth and Daddy P would come back as soon as he carried on. He tried to get past me, his breathing fast, tears rolling down his cheeks, pleading with me, “I need to get out, I need to get Daddy” and I was saying “No, no, if you sit down and do as you’ve been asked Daddy comes back, if you don’t then he won’t” but it took quite a while for him to calm down and do it. Maybe we’re doing it wrong – we’ve tried every way we can think of and it still continues to be an issue. He knows how to brush his teeth – he knows to brush his teeth for 2 minutes – he was so taken with Daddy’s electric toothbrush we got him his own special Spiderman one which he loves – his toothpaste hasn’t changed, he still uses the Aquafresh one for his age group and suddenly halfway through the existing tube he started complaining that it’s “too minty”.

Every morning before school he brushes his teeth for me without an issue. I cannot work out why on earth he feels so differently about brushing his teeth in the evening – and it’s not just Daddy P that has this toothbrush terror experience, if it’s my turn the same happens at the same point. I don’t know why, I don’t know what kicked it off, I don’t know how to stop it because I don’t know what started it.

As for bathtime … well … I really don’t know what on earth happened there. Our shower was replaced a while back, when the motor failed in the old one, but J is still very much focused on the noise of the shower, despite the fact the noise was due to the old one having issues and the new one is much more quiet. However like with his horror about hand driers in public toilets, as soon as you reach for the shower controls in front of him he freaks out, covering his ears, “No, no, no, no” crying big fat tears and trying to run away and hide. I keep saying it’s OK, it’s the new shower, it’s not as noisy, but even so it takes a while for him to calm down.

Once in the shower, he then doesn’t want you to wet his head, because he’s so frightened of water going over his face. Despite the fact he hasn’t had a ‘bad’ experience of soap in his eyes, and I’ve deliberately got him some kids shampoo which doesn’t sting the eyes, he will have a massive freak out about that, too, and then he’ll refuse to look up like you’re asking so the bubbles and water goes into his eyes and over his face and despite the fact it’s kids shampoo he’ll freak out. He doesn’t like the way the water feels on him, because it tickles, and rather than saying “it’s too hot” or “it’s too cold” he’ll just squeal a high pitched squeal and dance and try to run away so you’re left frustrated and trying to guess what the issue is. Sounds like it’s easier to just give him a bath, right? Wrong.

The trouble with a bath, is getting him in it. He’ll come into the bathroom and then run out again. He’ll shout, he’ll scream, he’ll freak out. He’ll squeal about the temperature of the water, and if you manage to persuade him to put one toe into the water chances are he’ll scream even more and run off screaming. If you manage to get a whole foot in, then it’ll be with much screaming and crying and guilt on my part because I think this cannot be good for him – it must be re-enforcing the idea in his head that bathtime is something to be feared and dreaded and seen as something horrible. Once in the bath, he’s OK, and he’ll wash no problem, but again the hair washing is a traumatic experience, with more screaming and crying and carrying-on.

Last weekend, we went to my in-laws house, as my sister in law was there for the weekend. With her was my nephew and my niece. J was thrilled to be going round there and seeing them but unfortunately he was far too over-excited from the start and the day was particularly exhausting with much screaming, crying and stressing – and that was just me! I’d had a brainwave, that we’d take J’s bath stuff with us so him and his cousin A could have a bath together; they’d last done it back around Christmas, and had a great time of it, thoroughly enjoying themselves and there was no issue at all from J about any of it. I thought maybe – just maybe – his cousin being there would make the experience more enjoyable for J.

How wrong could I be. It was a traumatic experience of tears, screaming, shouts of “no, no, no” , running off, refusing to get into the bath, arguing etc. Poor A looked on confused – he loves bathtime! – as his older cousin was freaking out completely and the noise in the bathroom was amazing. Little baby A, my niece, came upstairs with Grandma and to my amusement she seemed to find it entertaining – it was deafening in the bathroom but there was little A giggling away as if it was the funniest thing in the world! Me, however, I was less entertained. I was hot, I was exhausted, and I was on the verge of crying. I had to get Daddy P upstairs to help as everything I asked J to do he was refusing to do as I asked.

The entire experience was horrible, and exhausting, and left me cross with J, which made me upset with myself for being cross with J.

I’m becoming impatient now for this CDC assessment – not to put J into a box, but because without this assessment I’m unable to get the support I need right now for dealing with instances like this. As I said, I’m sure by forcing the issue and getting into stressful situations like this isn’t good for any of us – but he needs a bath, or a shower, the same as he needs to brush his teeth, so what else can I do apart from keep persevering, which leads to these awful situations? I can’t cope with his meltdowns at the moment, they’re getting more frequent and more difficult to get under control, and then when myself or Daddy P gets upset as well I feel even more disappointed in ourselves. We’re going round and round in circles, with no sign of it getting any better. I don’t want to spend my time shouting and arguing with him and taking away his pleasures and making things miserable for him, but I need help to better control these situations, to get them under control quickly and prevent them escalating or, even better, help to understand why he is reacting in this way and how I can stop it before it’s started.

His sensory perception seems to go into overload in the summer – whether it’s the heat, the bright colours, the crowds of people, the noise, a combination of it all, I’m not sure, but at times my wonderful, brilliant, bright little boy goes into complete meltdown and I’m powerless to stop it or help him. It seems to get worse each time summer rolls round – whether it’s as he’s getting older, or it’s because the summer is becoming more difficult for him to deal with as he gets older, I’m not sure, but we started off very positively with regards to support from his school with this but since his ed psych assessment we seem to have hit a brick wall and seem to be going nowhere. It looks like nagging Mummy P is going to have to rear her head again in order to get things moving once more.

With that in mind, I’m off to call the school SENCO to arrange a catch up meeting and see if we can’t shift things along a bit. Perhaps with her job role she’ll be able to contact the CDC and enquire whether we’re expected to wait much longer for his assessment, as I fear the longer we wait, the more damage is being (unintentionally) done. I hate the constant battles with him, he’s my boy and all I want to do is love him and protect him, but at times when your buttons have been pushed all day, all week long and you’re tired and fed up of the same old thing, it’s difficult not to snap and shout and handle things badly – I hold my hands up, I am only human after all and I do make mistakes! But I hope with some support and guidance we can make it through this without it ending in the big tears of upset, disappointment and guilt that too-often accompany our days.

Peace & Love,

Mummy P

x x x x x

If you’ve never dealt with a person with autism, it can be difficult to understand. While J remains undiagnosed, as time goes on I feel it is the key to unlocking his issues, better understanding them and helping him. While a diagnosis will make no difference to how I feel about my son, it will help me get the support he needs both at school and at home. For more information on autism, please visit the National Autistic Society UK page.

“Days Like These”

23/06/15

Sometimes, we have periods of days at a time where J’s behaviour is fabulous. Not flawless, because what four year old child is, but days at a time when we don’t have meltdowns or tantrums, hitting or throwing things.

At other times, we struggle to get through a day without several instances of up / down behaviour. Days like these are exhausting. Days like these, when I’m pushed to my limits, I wonder how I can cope, I wonder what I’m doing wrong, I wonder why I’m such a rubbish mum that he acts this way. Days like these are, unfortunately, more often than not.

Today, we’d had a fabulous day. He was up this morning in a good mood, well rested and energised. He ate breakfast and got washed and dressed without me having to prompt him every two minutes to hurry up. We left the house on time and he walked nicely to school, holding my hand, chattering excitedly as four year olds do at 8.30am about who he was going to see, who he wanted to play with and talk to, and the things he wanted to do. At school, the door opened and he gave me a hug and a kiss and with a casual, “Bye mum, love you” over his shoulder he ran full pelt up the ramp and into school. The teacher who stands at the door looked over to me and gave me a big smile and two thumbs up. I smiled and gave her a thumbs up back. A successful morning.

At the end of school, the teaching assistant Miss Brown said to me that J had a good day. She said they’d spoken about the school trip tomorrow and he was excited about it – I had been dubious as he’d been rather apprehensive last week at the prospect of travelling out of school without me or Daddy P – but she said today they’d had a chat and she’d told him some of the things they’d be seeing and doing and he was looking forward to it. One of the children celebrates their birthday tomorrow, so their birthday lunch was today and each child in the class walked out with a cupcake. Miss Morris, the other teaching assistant, smiled at me and said it had been a good day today. J came out happily, clutching his cupcake, and took my hand to walk out of the school without any issue.

We walked part of the way home with his best friend, K, and her mum and baby sister. J and K were chatting and hugging the whole time, as they do, and when we got to the point where they head in the opposite direction to get to their house, K ran off from her mum because she wanted to come home with us. Instead of running off to join her, J stood next to me, holding my hand, and called her a silly head for running away from her mum, and told her she should come back and hold her mums hand, because we were on a main road and, as he pointed out, main roads are dangerous and she shouldn’t be running around like that next to one. When she ran back, her mum managed to get hold of her hand, and she and J hugged and kissed and said goodbye. Without any argument, J then turned and walked away from her, still holding my hand, and we walked home. A successful school pick up.

At home, he got changed and then we sat down to do his homework. He was a bit silly about it at times, and got a bit distracted, but I reminded him that it needed to be done before I’d let him watch any TV (the biggest threat there meaning he couldn’t watch his beloved DanTDM Minecraft videos on YouTube) It helped to focus him, and the homework was finished before the timer went off. He watched some YouTube videos while I cooked his dinner, and ate most of his dinner before the timer went off. A successful homework and dinner time.

Daddy P got home from work, and we watched TV together with J cuddled up on the sofa with me, and Daddy P and I ate dinner. Unfortunately it ended up that it was later than it should have been by the time J went upstairs with Daddy P and that’s where the issues started. To start off J didn’t want to get into his PJs – then he started being silly about brushing his teeth, and started arguing with Daddy P about it. It didn’t take long for this to escalate, as they (metaphorically) butted heads as only a parent and a child who share a similar personality will do. The job of brushing teeth before bed, which should in theory take only a couple of minutes, turned into a 20 minute mission with J becoming upset, frustrated, crying, shouting, kicking, hitting, calling Daddy P a meanie head and generally the both of them becoming wound up by what should have been a straightforward situation.

Once it was done, and J was back in his bedroom, the switch flicked again and J was calm, wanting cuddles, seeking my affection and wanting to snuggle down and have stories read to him, as if the screaming and shouting of the last 20 minutes hadn’t happened.

It was only a small hiccup in an otherwise fabulous day. For J, it was a tiny glitch and given that it wasn’t a huge meltdown and it only lasted 20 minutes, that was a very minor moment over the whole day. But it’s an example of how quickly his mood will swing.

It’s difficult, as his parent, not to continue feeling annoyed and disgruntled with him for the less desirable behaviour once the moment has passed and he is once again ‘up’ and behaving in a more desirable way. You have to literally take a moment to have a deep breath before you continue, because if you carry on feeling down after a glitch like that, you’ll very quickly push J back into another moment. The more moments he has over the day, the more tiring it is for you both, and the worse the day feels. If you can get over it as quickly as he does, and move onto the next moment of the day without carrying those feelings of annoyance over from one moment to the next, then you’re going to have a better day.

It’s difficult, because parents who don’t deal with this type of behaviour often (I’m sure) think I’m being soft on J, that I’m somehow not punishing him enough for the less desirable behaviour, that I’m forgiving and forgetting too easily – but he processes things and deals with things in a different way to the generally accepted way of processing and dealing, and I’ve found that for him, my way of dealing seems to work well (on the whole). I break each day down into small segments – as well as remembering that he processes differently, he is only four years old, he’s still learning and developing, and a day to him is a long period of time, so it’s important, I think, not to carry on about something that happened in the morning well into the evening – it’s lost relevance by then. By breaking the day down into smaller segments, it makes it easier for him to process and it makes it easier for him to understand consequences of his actions. There’s no point telling him off in the evening for something he did in the morning. At the end of each day, we talk about the day in segments, and I award him stickers for each segment if he has behaved well for that particular segment. If not, no sticker, and then we count up how many stickers he has earned over the whole day, so then this allows him to see whether he has had a good day or a not so good day.

I’m learning more and more each day from him on what works better, how he works, what works for us as a team as we try to understand one another, what’s expected, what’s accepted, and we both make mistakes on a daily basis. The most important thing to me, is that no matter what, J knows I’m on his side; I’m trying my best, and I know he is, too. This journey we’re on has only just begun, and it’s exhausting and overwhelming and daunting, but we’ll make it together, because after all, he’s my boy, I’m his mum, and that love gives me the strength to fight these battles with him, to stand up straight and look to the future and not to be scared of it, but to want to educate myself, and others, and to find out all I can to help me better understand how I can support him.

It does make me angry and frustrated when people stare because he’s stimming, or behaving in a way they don’t understand because he’s feeling overwhelmed in a situation, but it doesn’t help to try and deal with them at the same time, so I tend to block out everyone else and deal with J as if we’re the only two people there. Quite often when I’m doing that, other people try and talk to me, try to help, try to make suggestions, and I find it easier to ignore them, which I’m sure they think is me being rude, and in a way it is, but my point is that I need to deal with him and the issues that he is having at that time – He is my priority, and with someone else trying to interfere with that it is not helping the situation.  If they stick around for long enough after the incident for me to speak with them, I’ll try to explain, but more often than not people tend to either leave you to it or when you try and explain they think you’re making excuses for what is a badly behaved child. I’ve overheard people say that I just need to tell him no, that I need to be more strict with him, that I need to give him a smack, and trust me when I say there have been times when I’ve wondered the same myself – but I’m not soft on him, he has rules and limitations and I don’t let him run riot, so even though I have these moments of doubt I can say confidently that this isn’t the reason for his less desirable behaviour. As for giving him a smack – well no, I don’t believe that solves anything. I have slapped his hands for things like reaching toward the fire or going to poke the dog, but I’m not the sort of person who believes that smacking a child to discipline them works, on the whole. I prefer to teach by example, rather than using fear of physical injury.

We’re no closer to any kind of diagnosis, which is frustrating, because I’m still waiting for an appointment for his assessment with the CDC. Having said that, I appreciate we are already at this point in the process, as I know of other people whose children are older than J who are still waiting for their GP to provide a referral, or for their child’s school to recognise an issue and start the ball in motion. I’m relieved that J’s school picked up on it quickly, and early on, and have taken it seriously, and I’m grateful to the SENCO at his school who has been by my side from early on supporting me and guiding me to get to the bottom of it all.

We’re just taking each day as it comes – as exhausting and exhilarating as it is – but by doing that we’re getting through each week, each month – and each year. He’ll be five in a little over two months time, yet it seems like just yesterday he was born. While some days feel endless, and I’m exhausted and don’t think I can do it all again tomorrow, we’re getting there together and at the end of each day, no matter what it’s been like, when he hugs me tightly and tells me he loves me, I know absolutely that every single moment is worthwhile.

Peace & Love,

Mummy P

x x x x x

An Update on J

06.05.15

So far, J remains unlabelled and undiagnosed. We’ve been in discussions with the SENCO at his school now for some time and both she and the school are very supportive of J’s requirements and he was fortunate enough to have an evaluation quite early on from the child development psychologist who agreed that further investigation was required as some of J’s behavioural tendencies are not within the ‘standard’ parameters. For the most part, I couldn’t give a hoot – he’s still J, regardless of what label and diagnosis he may or may not end up with – but I want the support there for him, I want to know that everything was done to support him, and his learning and development.

Following the child development psychologist evaluation, I then took J to visit the GP as the school are unable to refer a child directly – it has to go through the GP. I took with me a letter from the SENCO recommending that further investigation was needed, as well as the report from the psychologist and my own folder which has a diary of sorts, noting down events or days that have been particularly good or particularly bad, for whetever reason, noting down things that have happened etc, just to see if we can find a pattern for the behaviour and also to show that there are times, listed and dated, when his behaviour is off the scale and I don’t know what to do.

The GP briefly read both reports, watched J play for 30 seconds and announced that she didn’t feel there was anything to be concerned with and what made me think there was any issue. I pushed my thick yellow folder of notes across the desk to her. “Do you have time to read it all?” I asked. I showed her a video, perhaps the quickest way of getting someone to stop and pay attention to what you’re saying – actual recording, documented proof of the behaviour described being played out. She watched it. “I’ll refer him,” she said, “But I warn you, it’ll be a long wait for an appointment.”

Within a couple of weeks the thick envelope came through from the unit regarding J’s recommendation and asking me a whole bunch of questions about him, his behaviour, everything. It was massive to fill in and took me ages, but it was worth it to get it all documented and get the wheels in motion so to speak. A second thick envelope was included for me to give to the school, which I addressed to the SENCO, and now we wait.

J’s behaviour, on the whole, has been a lot better in recent weeks. He has still had some moments, but generally speaking he has been really good. We’re doing a sticker diary now, so at bedtime we go through the days events and he gets stickers for things that he did well and we discuss the good and the not so good aspects of each day. Then he adds up how many stickers he got that day – if he gets a set amount of stickers (or more) within a week then he gets a special reward. His rewards so far have been simple, easy to accomplish requests – two weeks ago he wanted McDonalds for dinner, and to eat in rather than get take-away! Last week he asked for a new game – Daddy P got him Minecraft on the PS3 and he’s absolutely crazy about it.

Today he decided to be a pickle and he ran off around the playground at hometime with his best friend instead of walking nicely with me. It took 15 minutes until we left the playground. I made it clear why I wasn’t impressed with that, and he apologised and seemed to understand. I deliberately draw a line under things in a set amount of time so that he understands each ‘section’ of the day, otherwise each day is so long with no end in sight for him, so we break it down as much as possible, which I have found helps with his understanding of time as well as when we do the reward stickers in the diary each evening. So between school pick-up and getting home is one segment of time – once we were home, the next segment began, and since that point he has been really good again. I think sometimes he needs to just run off some steam with K. Maybe one night after school now the weather is getting better we can take both of them to the park or something for a picnic tea and let them run around for a while and wear themselves out. I might suggest it to K’s mum.

It’s been a while since I sent off the form for his assessment, but we’ll see what happens! Hopefully the SENCO has sent back her form, there was a warning on the letter that it had to be returned by a certain date or they’d discharge him with no further action so I might have to double check with her that the form was returned on time, though I’m sure it was. She must be used to this sort of thing in her position!

Time to go and cook my dinner now …

Peace, Love N Pizza,

Mummy P

xxxx

A Dramatic Improvement

Since the Major Meltdown at my brother’s house over half term, I have noticed a dramatic improvement in J’s overall behaviour. I don’t know whether it’s because he had such a huge meltdown that he got it all out of his system for a while, or whether he took note of what his Uncle J said to him that day, but whatever the reason we have had a very good couple of weeks since then. He has had his moments, but nothing more extreme than what I would expect for a four year old, and the moments have been stressful but quickly brought under control.

I am still keeping a diary of his behaviour, as if it becomes an issue again I want a record of how long the calm lasted before the storm. I am confident though that if it does eventually turn out that he is on the AS he is high functioning and it shouldn’t have a massive effect on his everyday life. He seems to be controlling himself a lot better recently, and I’ve taught him steps to control himself by breathing deeply, not saying or doing anything until he has taken a deep breath and pushed out that breath while envisioning he is pushing out the anger and frustration he is feeling. It seems to be helping for those moments when he does get upset.

I hope that it continues – he’s happier, and I’m more relaxed.