Wednesday, 25 May 2016

Yep I swore...again.

This week we heard that after a long battle, the boys will be allowed to repeat a year at nursery before starting school! 


HAPPY BOYS!!!


I have been passionate about this as we see the boys change completely when they are with children their own age - they can't keep up and either walk away and cry or resort to romping with each other. Children their own age talk a lot and they talk quickly - the boys can't process the information and it's starting to effect their confidence. It's been a fight from the start but as with every battle we face we embraced it...(and in reality we didn't sleep until it was resolved and then collapsed in a heap after we got the news!).  We got letters of support from the boys amazing team of therapists as well as video evidence of them playing with a child a year younger and then with a child the same age. 

Apparently I was the first mum to ask for this video to be shown in the SEN panel. I was definitely the first mum to swear in our meeting with the Ed Psych too but i'm getting used to firsts!! Even though I asked for the video to be played in the panel it was another 3 phone calls, multiple emails and yes more swearing before it was confirmed thanks to the head of the case managers who agreed that we live in a world of multi media and yes of course they can play the video. Such a breath of fresh air to hear these words! Thank you Wendy Bollsover! 

                     Can't stop them from smiling right now!!
Turn around in the car to see these two holding hands! Best buddies xx

When I received the Ed Psychs report the day before the before the SEN panel, I stayed up until midnight tearing it apart point by point. It wasn't the Ed Psych's fault - she was following her testing criteria but the system itself is just absurd. No consultations with the boys 1:1 workers and any remark about their emotional wellbeing was complete speculation. Why aren't the parents points of view taken in to account? We know our children the best . Three visits to nursery are meant to determine the rest of their lives with no regard for the people who know them best. Inappropriate comments were included in the report as well as inaccurate research papers. 


The  boys with their best friend and cousin  - Luca. Love him for being so patient with them and for always being so tolerant when they rugby tackle him instead of talk to him! 


One comment that stays with me in our meeting with the Ed Psych (post my tears) is her comment of "Don't worry, if your boys go to school, there will be others with higher needs than them". Brilliant. That makes me feel just great. I'm not really in to comparing my kids needs with the needs of another but if we're playing that game then no it doesn't make me feel better!! Frankly I don't care one bit about their grades, I care about their emotional happiness and wellbeing. Whether there are kids with more needs than them at school is irrelevant and not a competition and frankly makes me want to help those other families! 'Cue more tears'. 

I definitely wasn't the first mum to fight for their child to repeat a year at nursery but there must be an easier way to come to a decision here. Even with my extreme preemie twin boys with ASD: (twins are known to develop much more slowly as they have shared attention and boys are known to develop much more slowly girls), born at 26 weeks (extremely premature, not just premature), with ASD (developmental disorder) we had a battle on our hands so I hate to think of how much other parents will have to fight. 

Visit from Godfather Chris who gave up a whole afternoon and brought them a gluten free organic whole foods bag of treats! 


There's a lot in the press at the moment about the pressures children face at school and how we are crushing them we are academic testing. Surely we can ease off children like mine who are already at a disadvantage? Why put them through the emotional turmoil of starting school when they are already struggling with their current setting? We don't have an age restriction for University but for some reason school is rigid and no one seems to know why...even the Ed Psych!

More Cranial from Miki

We are one of the lucky ones to be able to give them this opportunity and we are absolutely thrilled. They deserve this and I of course plan to help them as much as possible in therapy, diet, love and kisses! Love and kisses cures everything afterall xxx

2 comments:

  1. Simply brilliant Sophie, if I can help in any way just let me know...have a very successful trip to Florida to see the specialist David R

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