Our year so far in pictures

What can I say there has been a lot of change, my son started a new school at the beginning of this year, it was a tough journey, but he is progressing there much better. He is a lot happier boy.

We moved house and finally got our permanent home!

The only flip side is my mum was diagnosed with cancer around the same time. However, doing the best that we can as always.

Reluctant Pirate

Very true!

Indeed we do, celebrating Valentines

Daddy’s birthday

New teddy coat, apparently I am now the female Del Boy with boobs ha!

Lunch time visit to see daddy at the park

One charity I will not be supporting, I have my reasons. Hypocrites!

Conker obsessed

Peaceful spot nearer to home

Summer holiday dinner time date with my son

Taking Mingo to see nanny in London

After his first concert

Indeed, hoorah to self care

Bye bye to our house

Lego Shop Trip

Summer walks

Camden Lock and Paddington

It has been good to see my boy have fun again this year, rather than just have a childhood full of stress!

Breakfast Muffins, yep always have plenty old bananas, I am bananas!

Good start to year 2, Star of the Week

New home and decorating

Space Swords!

After a most deserved facial after a winter of discontent

Achievement Award

Valentine’s celebrations 2019

Home made crumble

September walks with my son & Mingo

 

 

A Slight Return

It has been some time since I have returned to writing and providing commentary on my parenting journey. I will need to return to the past, July, end of the 2018 summer term to be exact as a starting point. Then we tried to have some optimism that things were heading in the right direction for my son and his schooling. Things were not perfect by no means, but we were hopeful that the next academic year for my son was the one where he would finally settle into his new school. However, that was not the case. The fact my son was illegally excluded again on the last day and afternoon of the summer term should have been a tell-tale warning sign to us as parents that this school could not live up to its own values of honesty, integrity and doing the right thing. We deluded ourselves thinking that the staff were trying their best with a lack of funding (a national schooling issue), and were just absent minded about the paperwork and we would give them a chance, and ultimately would any school deliberately set a child up to fail?

Summer holidays rolled on, no significant issues, he did have one meltdown at his first short notice full day at holiday club, which was planned last minute as my mum who helps us out with childcare a lot had to have a unexpected hospital visit. His behaviour to us at the time was no worse than any other child his age, but we realise he can have a short attention span and is very energetic. We had a follow up paediatrician appointment at the child development clinic, the only thing I was surprised at was hearing the full details of his school’s views. Something that despite yes, the few initial fixed period exclusions when he first started there and an enforced part time timetable that went on from end of January to early July, they were not forthcoming about it to us as parents. Despite several meetings we had with them that year I never really felt they were truly honest with us and I was in shock about how different our views were about my son and the fact the last meeting I had with the school before the summer holidays commenced, they were quite positive about my son’s progress and he was back on a normal school full time timetable. We were surprised ourselves that his timetable was increased so quickly from attending mornings only to full days again, but we had to have faith that the school knew what they were doing. In hindsight, I can say obviously not.

My son returned to school in September 2018 to his new class and teacher, everything was quite positive at first, getting thumbs up signs from his new teacher, coming home with regular good behaviour stickers and certificates. It was all going swimmingly well 3 weeks in, and then the phone calls started again, “your son is showing signs of agitation, and we are quite concerned, we really would like his time at school to stay positive, he has done so well and we don’t want him to fail, and think he would be better if he goes home this afternoon to cool down”, my reply as usual “okay, that’s fine, but I am concerned this is not an illegal exclusion as I am not comfortable with them”. Silent pause on the other end of the phone from his teacher, then “of course not, yes I agree the best place for your son is in school, I absolutely agree”. His teacher passes me on to the deputy headteacher, which I get the usual gibberish about I shouldn’t view them as illegal exclusions and we just don’t want to set your son up to fail, and your mum has been an absolute star, “I understand that Mrs name I cannot repeat for legal reasons, but I would like this afternoon’s exclusion put on paper and recorded as if it is not recorded the school will not get the help and support that my son needs to stay in school”. School finally agrees. This is the first one of many fixed period exclusions that happen over the next 9 weeks at school, each one increasingly becoming more concerning and severe. Yet after attending regular meetings at the school during this time, no change in tact, intervention or further support is brought in or agreed, just carry on with existing arrangements as that is clearly working I say ironically. I regularly report back to my son’s paediatrician about his difficulties in school and we are finally given a short notice appointment with him during one of my son’s longest fixed period exclusions, his teacher and Senco from his school join us at this appointment. However, to be honest our relationship with the school is reaching its all-time low, but my family despite everything are still trying to work with the school. Another reduced timetable is suggested with more intervention and support, we feel we have no choice to accept it, but are wary and concerned that another sudden change may escalate my son’s already temperamental and erratic behaviour. The part time timetable starts again in mid-November 2018 and as I feared it doesn’t start well, in fact second day into it my 5 year old son manages to abscond from school literally 5 minutes after being dropped off at the reception entrance. We are not informed about this incident until later in the day of course. Alarm bells should have been ringing? They were, and I really did have serious concerns about sending my son back to the school. I had already sent a parental request for an EHC needs assessment off to the local authority earlier that month and was awaiting a response. My main priority was trying to prepare for that and any rebuff that the local authority would make. I was in two minds about getting my son signed off by the doctor on health grounds as I was worried about the mental impact this school was having on my son’s wellbeing. However, later that week during the first week of the part time timetable my son appears to start settling down and even came home with another good behaviour award, and we started to think despite our doubts that maybe this timetable was starting to work.

Our bubble was burst finally on 19th November 2018, my son was permanently excluded from his school that we have been trying to work with since he started there earlier in January that year. My partner went to collect my son from school that afternoon and my son was discovered in a completely distressing state, so distressing that I am not going to mention all the details on here, his school completely failed in their duty of care to my son. My partner has always been the more optimistic one out of us, if the headteacher never made the permanent exclusion decision that day, we would have never returned him there anyway and my partner for the first time would have been in full agreement with me. The ironic thing is the local authority decided to accept my parental EHC needs assessment request a few days beforehand and started gathering evidence from the school on the same day he was permanently excluded from it, make what you will of that.

After a tough few months, my son is now settling into a new school, we have a draft EHCP agreed, waiting for a final to be issued. We have been through a governing body hearing and an independent panel review hearing with the help of a law student representing us, which we will always be highly appreciative towards as it would have been a lot tougher to go through those processes alone. It was finally decided on the 1st March that the decision my son’s previous school and headteacher made was unlawful and should be quashed, the school have chosen not to respond to this within 10 days, so it has later transpired that the school should be fined, fees adjusted. We would have rather not gone through this whole process and spared my son the anguish, and the effects this whole experience has had on his self-esteem, but we do feel vindicated and one can only hope the school learns lessons from this, but I won’t hold my breath on that one. My son still has no diagnosis, despite going through his first ADOS assessment in December last year, but the assessment was incomplete. As I said earlier we are still waiting a copy of my son’s final EHCP, which should release additional funding to my son’s current school to support him further. This does prove that EHCPs can be gained on a needs basis and a diagnosis is not always necessary, we also realise that the EHCP is just another beginning for us and we will have other hurdles to overcome no doubt. However, it feels like it has been a long time coming, 2 years to be exact.

https://schoolexclusionproject.com/

https://www.ipsea.org.uk/making-a-request-for-an-ehc-needs-assessment

Thanks to The Bluetones for blog title inspiration

Glossary of terms:

EHC = Education, Health, Care

EHCP = Education, Health, Care Plan

Senco = Special Education Needs Co-ordinator

ASD = Autism Spectrum Disorder or some people prefer Condition rather than disorder

ADHD = Attention Deficit Hyperactivity Disorder

ADOS = Autism Diagnostic Observation Schedule

Less judgement, more compassion!

Had enough of the working mum guilt trip!

Had enough of the scrutiny about how much time do we spend with our child questions?

Like do we even spend time at the weekends or school holidays with our child? Of course we do, and we would spend even more time if we could, but there is such a thing as running out of leave and money.

Had enough of the judgement, don’t burden your son with money worries, no we don’t, but he needs to know the real world. He cannot have everything he wants, there is no magic money tree, mummy and daddy works not because we don’t want to spend time with our son, but because we need to provide. He needs to know that!

He also knows that some people have it harder in life than we do, and we are lucky and I hope in time we teach our son something called compassion for those that are not as fortunate, not pity, but compassion. I think right now he is too self absorbed to take it in, but he is only 5, but he knows that there are richer and poorer people out there that struggle more.

He also needs to know his outbursts may not be his fault, but they upset people none the less, but will not have him painted as some remorseless monster! He is just a small boy having a difficult time right now and shame on those that judge, when they are suppose to help!

The night before starting school… again

My son says he is looking forward to going again, so that is something, he is not refusing, yet. To be honest I think he had a meltdown at the end of last term as he just started to get into the swing of going and doing full days, and it ended too soon for him and he didn’t want it to end. However, never received a very good account of what happened from the school. We walked by the school yesterday evening to show him that not much has changed, he knows he will have a different teacher and be in a different class. We will just have to see how he embraces this change and copes.

As for my health kick as kind of ordered by the doctor, I have lost some weight, but not as much as I would like. According to my own scales, it’s about a 6 lb weight loss since I started cutting down on calories about a month ago. However, I had a scan a few weeks ago to see if any abnormalities were causing my recent issues and symptoms, and everything is normal, relief and to be honest had no symptoms for the last month. I would still like to reduce my weight, but I find it difficult to increase my activity during the working week, other than I am using stairs more. I stopped that as I had awful hip pain for over a month from last April and I was told ages ago when I first started to get severe hip pain after the birth of my son, that stairs can make it worse. However, hip pain has settled so starting to use stairs more as long as I do no heavy lifting up stairs I should be fine. I could fit more exercise in the evening, but my son is still an unsettled sleeper and my OH has just started a new job, got a promotion eventually, so not a good time to join a gym just yet as will not commit enough time to it. I have tried to increase steps over our summer break and weekends. Over the holiday I averaged a daily 11,000 steps, but my usual daily average is around 7000 steps per month. In August I managed to increase it to just over 8000 steps for the month, helped by the increased walking on our holiday. Not sure how well I will do this month, find it hard to reach the recommended 10000, although I know it’s a bit of mythical number as some people need more and some less, I am probably one of those people that could do with more though due to my sedentary job and I don’t think my metabolic rate has ever been fantastic. I finally found a jumpsuit to document my weight loss so that will be interesting, sorry more embarrassing ha will this unyummy mummy ever turn yummy? Particularly one that is getting closer to 40 than 30 hehe Don’t worry I am still trying to love myself as I am, but for health reasons and for wanting to be around for my son in a fit state need to try reduce my weight, but we shall see if I can progress with that.

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.

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.

Local Woodland Playground

Woodland trail walk

Flower gardens on a summer hols weekend excursion

Flower gardens on a summer hols weekend excursion

Our new abode, as if?

Eating out

Eating out

Painted stone finds

Loving his glitter tattoo from holiday club

Telling daddy how to pose

Days at the beach

Sand castles

Seal Trip 2018

Our coastal stay

Bye bye holiday cottage

Money Where The Mouth Is

inco14

I’m as worried about the financial crisis in SEND funding as the next SENCo.  I’m following my Twitter feed and the news and seeing the same things that we are all seeing – real terms funding for students with additional needs has dwindled to crisis point and it doesn’t look set to improve.  No doubt, increased funding is absolutely necessary in order to ensure the best education… no, the safety, wellbeing and any education… for our SEND children and this sits within the wider context of a reduction in funding and resources for those with disabilities in adulthood and the crisis in the NHS.  It is all very bleak.  I saw, as I’m sure many reading this did, some head teacher speaking on the news saying that the last thing he’d want is to be turning SEND students away because the school can’t afford them.  Afford them?  What are schools…

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Celebratory Fizz

I finally actually knocked back a couple of glasses of champagne this evening. It has been, I am actually going to use the f bomb here, a fucking awful year. Tried hard with childcare and school over the last year for my son, but have been complete failures and been ripping my hair out wondering if there are other things to be concerned about and going on for my son. Well he has fucking done it, finally going full time at school next week, I don’t want to get my hopes up too much because could have another setback. Also finally cracked open the champagne as well to toast good health to my mum, 70 years young last week! I think she is looking forward to getting some of her life back in future to do other things than childcare for me for once, but we shall see…

Feelings

Feelings in reverse order (Thursday 21st June, the longest day literally until now)

Want some kind of life change, knowing that some things can’t change, one thing isn’t changing quickly enough and then after getting through completing something that can bring on a change that I am disatisfied with, but starting to already feel disatisfied with the potential new thing ha in the words of Bono & U2 ‘I still haven’t found what I am looking for’ ha

A few moments peace in our garden earlier today, when we first moved to the property it was the thing I liked least about the new place, but with a few changes and things added feels much better and actually is relaxing to be in. Far from perfect, but better.

Thanks for those that keep visiting the  page and equally to the unlikers, ha had a better night’s sleep last night compared to last couple of nights and strange experience from the night before. Shadow people in the form of what I initially thought was my son, childlike form, neurological phenomen or paranormal who knows? Either way it was unsettling, she’s nuts you think? Yep, but who cares?

Drained, hoping to get more sleep, nice to see one of my son’s dreams come true today and he got to see his favourite steam train, the Flying Scotsman go pass our local station today. He also had a great gymnastics session, despite the initial setback of changing clubs earlier in the year. I actually think he has progressed lots. Just need to work on my current mindset, which feels pretty low and possibly change jobs at some point

I did manage to hold it together for the afternoon, son enjoyed his garden time and play in his mud pit, water table, chalking and watering the plants. However, just as depression is difficult in the sunshine as in the expection should be you are jolly and happy, night times are hard to switch off

Apologies for no posts for a while, well nothing of real substance as of late. I am struggling with anxiety and slight depression again, although not as bad as I experienced a good few years ago. My son’s schooling has not helped, and although I think he is making huge improvements and progress myself. Yet, I got a whiney email from his teacher a few days ago about my son being unsettled, despite informing them on Monday he had just recovered from an earache and could they be mindful about that. Even perhaps get the school nurse to have a look at it, and yes, he was well enough to go as he had no temperature and had been giving him pain relief for it, and on top of that dealing with the workplace stress and my MIL being back in hospital again after the third time within the last month it has all been too much and it’s setting me back. You could say I am whining too, but can only take so much and having a break. Have to say it’s easier to feel negative in the winter, when the weather is sunny the two things just don’t go together.

New Blog

Okay I did promise a new blog sometime, and it has been a long time coming. It is now the school holidays again, and to be honest it is a relief. My son’s behaviour has stabilised at school, although there has been one alleged incident on his first school excursion with his current school, but call me cynical I actually felt some of that was exaggerated for effect and the timing felt a bit off actually as received news of it shortly after we inquired why my son had received a black eye at school. I don’t think he was hit or anything, but am concerned he had an accident at school and it went unnoticed, I don’t know how it could go unnoticed as my son is like a footballer when it comes to pain and can be quite a drama queen. I was not impressed with the school’s response and deflecting attention away from this by citing an alleged incident, in fact I was starting to believe it is a bit discriminatory due to the school’s feelings they do not have the resources to manage my son’s unidentified SEN needs (again not sure if he has any additional needs or not, but it is clear he has not found the school environment one easy to transition to). Despite this setback and both his father and my annoyance with it, he has continued to progress at school on an upward curve and his hours will gradually increase when he returns to school after the holidays. I also believe he is just finally settling into his new home and surroundings.

We have spent the weekend mainly gardening, as well as my partner doing trips to see his mum, she is yo-yoing in and out of hospital again. I won’t say all how I feel about that, but it is not easy and fear how my son will react to constantly spending less time with his father, but I hope my son is more resilient than I give him credit for, but we shall see. Discovered a new local park over the weekend, a short walk from the town centre, which is handy and my son tried holiday club again today, this time success! I am very relieved and hope he has a equally good time when he goes again.

As for me it looks like some potential benign tumour growth(s) have occurred again, it is very likely that they will be benign again and this type of growth rarely signals cancer. I will be having further investigations in the summer, so keep your fingers and toes crossed. I am a little anxious about it mainly as I am not the greatest patient and didn’t really want to be going through this rigmarole again, but I know it could be worse.

Potted Garden

Potted Garden

Potted Garden

Down by the river

Palm Tree Strange Fruit, Okay flowers

New Park

Pleased with our gardening

Found lovely poppies while walking

Mummy driving for gardening supplies, my lo loves it whenever I get a chance to drive

Take care and wishing you a pleasant June!