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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

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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!

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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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We are where we are

So we are where we are – by the way I hate that term.

After the monsoon of an Easter holiday, which my family all took their turns in covering and my son got to spend some quality time with all of us, and even tried out one morning at a new holiday club, which went so so. It was not incident free, but he admitted he was nervous to try something new without me and he seemed to be doing OK, well without an incident until a hour and half into the morning. However, looked like usual awkwardness from him, then lashing out and running away, so we have to accept there maybe some kind of autism thing going on, but clueless to triggers other than not keen on change/routine change. However, on the plus side the holiday club said he is welcome back despite his difficulties, which is nice to hear after all this time as most don’t want to know.

However, he seems to be progressing on an upward curve at school, and his teacher wants a meeting with us to update us on his progress and I hope his hours increase, but we shall see. To be honest I am struggling and feeling overwhelmed by all these people demanding our time, and this support being offered seems to feel like more breakdown inducing than helpful. My work situation is dire, will not go into details, but whether I struggle to fulfil and maintain my hours or not will not make a damn difference with the situation that we have been forced into, and yes, it was my birthday the other day. So I am another year older and unfortunately made a discovery a couple days after getting a year older that I may have another physical issue with my body recurring, just what I need. I had an endometrial polypectomy about a year before I conceived my son, yes, which probably helped a lot with letting me have a child finally, but I am just spotting similar signs again and well I am not the best patient, and rather this is not the case, but we shall see. Off to the doc I go.

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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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The Assessment

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News hot off the press from the initial assessment by the paediatrician, my son does not have ASD and it is very unlikely he has it!

Again, you think we would be celebrating by now, but no, we have not been discharged as yet as his behaviour he is apparently presenting at school is still very challenging.

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If only?
However, there is a huge difference with his behaviour displayed at school and at home or social settings we take him to. Of course we have some issues with his behaviour, but very different to the ones he has at school, our issues is bed-sharing to go to sleep, occasionally running off (although a recent marked improvement) and the occasional fussy eating. The aggression is not as bad with us, but yes, sometimes he can be a grumpy uncooperative bugger, but nothing I cannot deal with.

The paediatrician also said maybe I am too much of an expert on my son and preempt his tantrums a bit too much, and should let him get on with it and try to problem solve these incidents for himself, and then yes, get yelled at by some some chav family that my son has got crossed at their child ha!

So that’s where we are, in limbo and no man’s land. His school have made it clear they don’t find his behaviour easy to manage, but have no idea where we go from here.

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Been suffering with multiple chest infections and colds as a family, and stress of this probably doesn’t help me.

Looking forward to resuming our son’s gymnastics class tomorrow after a week break because of illness and hoping he is still making good progress here!