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Our last CDC appointment

It has taken me some time to sum up my thoughts about my son’s last child development clinic appointment, which occurred about a week ago. The last time we saw the consultant was back in March where he was doing a wait and see approach, wanted to give him time to settle into his new school and environment, but the consultant gave us some ASD and profiling questionnaires for both us and his teachers. I think as usual we are at the same conclusion as last year with the NHS, we have radically different answers and results than the school. We see less of the problems, not saying there isn’t any issues, he is not a perfect child, but we do not have the level of meltdowns in our care and he definitely is having issues at school and other care settings. However, I still need to be utterly convinced ASD is the right label for my son. I don’t think the ASD conversation last week was handled sensitively by the paediatrician in front of my son and nearly caused a meltdown in the surgery itself. To be honest my son was managing to control his behaviour as long as possible with the amount of waiting around we had to do, as our CDC for our area is in the most inconvenient place and no where near us. We waited for two buses, instead of getting an expensive taxi this time, which are difficult to get hold of where I live. I know you are thinking why, but there just isn’t enough local taxi firms where we now live. One of the bus journeys was nearly an hour long, and we ended up having to arrive early for our appointment due to public transport connections, and his appointment ended up running slightly late anyway and he did his best to entertain himself in the waiting room with the toys they had. He also had a lunch time appointment, which isn’t the best time of the day as he was getting hungry and had eaten all his snacks that I packed for him on the way, but we had no other choice to accept or otherwise wait another month or so for another appointment. I have complained, a) suspected ASD diagnosis not handled sensitively in particular in regards to my son’s suspected diagnosis b) I think we have waited long enough to get an assessment in school, and this should be triggered before the half term arrives, I know I probably have unrealistic expectations in particular with regards to how the NHS operates, but NICE guidelines recommends assessments should be done within 3 months when there are any suspicions of autism c) We have a right to see the answers to the school’s questionnaires.

I am now waiting for answers to my questions.

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Summer holidays so far (2018)

It didn’t start well, my son had a meltdown on his last day at school and we were called by the school to take him home in the afternoon. I gave in and said to my mum to collect him, and stop the school from losing face and embarrassment at the end of the school day from other hawking eye parents. I know it was another illegal exclusion, but I was thinking more of my son’s feelings, but this cannot go on into year 1. To be honest my son has been doing better and progressed to a normal full time timetable for the last few weeks of school, has been joining in and attending lunch time and playtime, and has coped without a major meltdown since April. The last one was at his first full day school excursion with his current school. I did ask the school for a full explanation of the end of term/academic year incident to pass on to the paediatrician at our next child development clinic appointment, but being the end of term/academic year and all, we didn’t get one and not holding my breath that we will get anything useful or accurate from the school about that now.

I did fear that summer holidays would now become something negative and ominous, but just a few days away from school, my lo appeared to settle down and become more relaxed, and much better behaved. He has been spending a mixture of his time at holiday club, with his nan, quality time with his dad and with both of us fully at the weekends. We have had no reported incidents at holiday club since April (his first session there) until the day we unexpectedly had to try a full day due to lack of childcare, my mum had to attend a short notice and urgent hospital appointment a couple of weeks back and we only had originally planned to send him for a half day morning session. Unfortunately he did not cope well during the lunch time session there, and had a full on meltdown. However, the holiday club are actually much better at communicating incidents to us and I have a written report, something concrete to pass on to our child development clinic appointment this week, although I don’t know how much use these appointments are right now. After 45 minutes he did calm down and rejoin activities, and the holiday club have welcomed him back and have been very professional so far. Fortunately for my mum all the test results came back clear, and she will be monitored for a year for a couple things that they did find on the scan, but so far looks like nothing nasty.

We have also started sending my son to summer school and getting him extra tuition, which I know seems a bit early as he is only 5 years old. However, one bedtime he told me he was upset about getting things wrong in his phonic lessons and it seemed to bother him, and I don’t want him feeling sad about that and it hasn’t been fair that he has missed almost half a year of school, because the school cannot manage his behaviour. I saw a local education centre that accepts childcare vouchers, we haven’t been using them much as we have been prevented from accessing wraparound care due to his reduced timetable. I had this education centre in the back of my mind as something we might use in the future, and not necessarily now as I didn’t want to put him under pressure. I really wanted learning to be fun for him, but I have fast track these thoughts as I want him to feel confident and not left behind, so far he has had one assessment and 4 lessons, and it seems to be positive so far and it is nice to see him feel like he has accomplished something after each session. He still has a long way to go to catch up, mainly early reading and writing, but it is a start, and we are continuing these lessons in term time after school.

The family holiday last week was so so, very good moments and then low moments. I can’t fault my son’s behaviour when out and about he was mostly fine, apart from the long journey back home, but think we were all tired and tetchy. However, every time we were back at the holiday cottage having some down time, my son was quite rude and obnoxious at times (hard to believe he looks like an angel), and completely different child to one when we are taking him out to places and doing activities. To be honest it tried mine and my OH’s patience, mine probably more so. Also we were struck down by what seems now as two tummy bugs, my son in the early hours of Wednesday morning and me on Friday morning last week. I thought the days of dealing with vomit on holiday was behind us, but obviously not. Also not sure whether that had a part to play in my son’s downturn in behaviour as it was really towards the end of the holiday his behaviour started to become grating or whether some of it was just boredom, he seems to get bored quite easily and better now we are home with his toys, which at least seem more exciting to him again. We both got over our illnesses quickly and I was pleased that I still managed to get myself ready to go on a seal boat trip that Friday morning, and not let anyone down. Although when we got back to our holiday cottage that afternoon, I started to feel bad again with a low grade fever so had to hand childcare duties completely back to my OH while I rested in bed and they had fun spending my money at a amusement arcade and going to a local park that has this fantastic playground ship, very realistic looking and lots of fun for kids. Although spitting boy incident (not my son I hasten to add) on it earlier in the week will always slightly taint the good memories.

Still back to reality, son is back doing some part day sessions at holiday club, last week of them and hope he gets on okay. We have our next paediatrician appointment later this week, not sure what to expect from it or whether I will get a ticking off for not arranging to attend the sleep workshop earlier in the year, but I cannot take any more time off of work to attend these daytime workshops plus cover childcare in school holidays to give my mum a break who has been supporting us throughout my son’s reduced timetable and my attendance is now being monitored at work due to taking one week off of sick, pah! Anyway just over 2 weeks of summer holidays left as I have previously said not sure whether I am looking forward to him going back to school as for one thing, although the childcare is difficult to cover over the school holidays particularly the summer one, the phone calls about my son’s behaviour or the fact they cannot manage it have ceased. So some external sources of stress has temporarily diminished. However, we shall see how he progresses into year 1 and whether he does really need an EHCP, as I am still baffled.

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Relief or Cry?

The family dramas of recent months have been decreasing, in terms of managing my son’s behaviour and my own emotions towards them, but still more issues than I would like. I still do not see it as the ‘crisis’ my son’s previous school was alluding to, although some may disagree, but he has handled things better than some people may have expected from him. However, the continual changes to his school timetable are not helping, and yes, I know there are issues at school that need to be dealt with and prevented, but what to do right now?

We eventually got an appointment to see a paediatrician for a second opinion, and they have said possibly my son has mild autism that needs to be assessed and investigated further. I don’t know how to react to that, feel relief or cry? I still don’t completely know what to think… Am I annoyed that a previous childminder was possibly right? No, as she said it in a really unhelpful way as I held long term suspicions, but was reassured by other health professionals I was over worrying and I don’t see how she said anything that was supportive or helpful, but came across that I had a child that was possessed, not just having difficulty communicating some of his feelings. Still onwards or upwards, as still a long road to travel down yet.

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Isolated

I never felt so alone dropping my son off at school this morning, to be honest I don’t normally do the school run, my mum has been filling in for me due to this reduced timetable for my son that the school has enforced. However, for the past couple of weeks I have been doing the Monday morning school run. My son was not overly keen to go to school this morning, but he went in without a struggle, although we have this usual routine of waving goodbye at the school classroom window before I leave through the school gates and I could see he was forcing himself to look happy. However, I hoped he would manage to cheer himself up. Considering he had an extra long weekend with us due to the school’s decision to close the school on Friday due to the wintry flurries, I thought that he had made a good effort and was trying.

To be honest I felt lost and alone as much as my son today, had Mum girly gangs swearing behind us in front of the children (probably don’t get half as much grief as we do), babies in arms and showing off barely there baby bumps, and well I just feel a million miles away from this. I don’t want to get involved either, just not bothered and do not fit in, but worry about my son fitting in. I try not to worry and carry on with my day, and get myself to work, but less than an hour into the school day his teacher calls me that they cannot cope with his behaviour again and he has been excluded from school again. My tether is threadbare and something is about to snap!

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Back to School

Half term break is over with, am I glad it has come to an end? Yes and no really, I loved spending time with my son, but was running out of steam by the end of the week thinking about interesting things to do each day. To be honest we were so busy by the first half of the week, that we needed some downtime by the end of the break. In fact, after the first day back at school, my son has come back ill and cannot go to school for the second day, hope he feels well soon, it has been one chesty cough and cold after another since January. I also dreaded the meeting with his school about my son’s behaviour as soon as he went back, but I think my son was happy about the break we had and is looking forward to the next, although seems far away at the moment. He joined the line at the beginning of the day at school with the friend he has formed an attachment to and bumped into at Softplay during the school holidays. In fact our soft play day was the worse day for us of the holidays, never tried this soft play centre before as obviously we are new to the area, but was busy to be expected, because of school holidays and the weather was crap that day, but with over a 45 minute wait to get in, registration fee, expensive entry fees with paying for yourself to get in too, the experience was a bit of a let down. Facilities were not in the best state, complete carnage, mile long queues for food as well, a bit of a mess and got shouted at by another mother for grabbing a chair for my OH to sit at a table with us, the family at the adjacent table was leaving, but another family arriving was eying up the table although I had been stood there for 5 or 10 minutes next to it sorting our things out. Anyway we eventually moved as didn’t want to be sat next to a hostile family. The best part of that day was seeing my son bump into his new school friend and seeing them enjoying playing in the role play rooms, making the most of what I could just see as carnage and a state ha!

Going back to school issues, finally met the school Senco, and a language assessment has been done on my son and he is at the level where he is suppose to be for his age group. So, his issues are not down to a language delay, I am relieved, but never thought he had a language problem. However, he obviously finds it hard to communicate and deal with his anger and frustration issues, and after talking to his previous paediatrician she is sure in her opinion there are no medical issues behind his behaviour, although has helped us get him referred again in our new area for a second opinion. So, these settling in issues at school are frustrating and at a loss still, however, recent illness is not helping his attendance or progression. Yesterday he did have a good day, when he does return to school I hope he can keep up the good work. I have left images below of some of the best bits about our week off together.

Trip to The Postal Museum, London

Trip to The Postal Museum, London

Mail Rail, The Postal Museum, London

Sorted! Play area, The Postal Museum, London

Another adventure with Ted and Churchill

Meeting Robin Hood, Nottingham

Visit to the Kitty Cafe, Nottingham

Visit to the Kitty Cafe, Nottingham

Fortress Play Area, Nottingham Castle

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The last 2 weeks

So what can I say that I didn’t say the last time, new house is starting to take shape and getting more organised, but still have a fair way to go and well the garden, the less said the better, we will try to sort that out when it gets a bit warmer. Also doesn’t help that viruses have been spreading through my family like wild fire for the last 2 weeks.

My son’s behaviour has taken a down turn at his new school, again, in fact a complete nose dive, although I wonder if the alluding illnesses we have been suffering from have contributed? However, again do not want to be told off that we use illness as an excuse, but most adults are complete grumps when they are ill. Fed up of posting on mothering forums about our issues for support and not even trying to meet new mothers on these social media Mum apps and the alike. I have tried a new local Gymnastics class and playgroup, more for his development than to be social, does that make me a grump? Most probably

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Settling In?

4 weeks have passed by since the move, including Christmas and New Year’s festivities, although we didn’t do much for the latter, apart from tidy up the old place the best that we can, which apparently was not appreciated that it was our best effort. Almost got into a dispute about that, but after highlighting a few technicalities the owner had to back down. Honestly, wanted to charge us for moss on the outside garden wall and the alike. Anyways moving on from that saga.

Slowly unpacking more each weekend at the new place, put most of our pictures up last weekend and it is starting to look more homely, even my son said ‘it is really our home now’, like he just got it’s not just a holiday home despite all our boxes being stacked up in it with our belongings. Still yes, it is our home until we can eventually find a proper forever home one hopes.

We have been missing our old playgroup and gymnastics classes, but have tried new ones of both things in the area. The new gymnastics class is run by a smaller club in a school hall building, less coaches and equipment, but my son said he wanted to go back that is the main thing. I am hoping to get him back to a similar club in terms of equipment and more one on one coaching provided at some point, but local waiting lists are long. The playgroup was more craft based than the old one, but think my son is now ready for that as before he just wouldn’t have had the concentration. He can move around from table to table trying various crafts, my OH didn’t like it so much as it was a bit happy clappy, and it was, but I can let that go for the sake that my son liked it there and it is good for me to see how he behaves around other children other than doing something like Softplay.

This leads me on to how he has been settling into school, he was doing fine until last week. They started him on half days/morning only sessions for the first week, they told us they couldn’t see any significant concerns other than he was a bit quiet the first week (I told him he was not really quiet, but just nervous because everything is new), but then they said they wanted to try him on proper full school days, the first 3 went well it seems, but last week there were some incidents. However, which seem to coincide with me complaining to the old school about our childcare refund and their data error about having his parents down living at two separate addresses, not there is anything wrong with single mothers, but don’t insinuate wrong information and expect me to be OK with it! I believe the old school have been in touch with the new school causing trouble again, in fact I have it in writing from them that they have done so, and it just magically coincides with the downturn in my son’s behaviour. I have to say my son’s behaviour was at his worse since starting a reduced timetable at the other school, firstly I don’t think he knew whether he was coming or going, was not burning his energy off as there is only so much my nearly 70 year old mother can do with him in the winter and yes, possibly some feelings of agitation and anxiety with the move.

However, the last week or two we have noticed an upturn in his behaviour at home and think he is settling in his new home here, and not so much the ‘Crisis’ his old school were over-egging it was going to be. Rather do a move like this at his age than when he is older and has more established friendships with children. We have another glorious meeting with his new teachers this week, and hope it doesn’t spell more trouble as it often does.