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The Final Chapter

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After another very long gap between posts, I have decided that this will be the last update I do on this blog. Little C is at the age now where it feels unfair to share details of his life and struggles without his knowledge or input. Even though I write this anonymously, I know lots who read my blog know us in person so I want to respect his privacy. But I really hope that what I’ve shared over the years has been of interest or of use to people in one way or another. I’m keeping my blog available for now as it is still getting viewed most days, and I’m really proud of the number of views it’s had (over 11k) and of how far around the world our story has reached. As for Little C, he is doing really well overall. The main change in his life has been socially. At the end of summer last year he found a sudden desire to have friends, something he’d shown little interest in until then. With the sunny weather upon us recently, he has spent a lot of time outside playing with whoever is out (an...
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Ho Ho Hopeless

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Thought I’d do an update on the never ending school/EHCP saga that I wrote about in my last post. I left on ‘will they say yes or no to my proposed EOTAS package?’ (worlds worst cliffhanger I know)  I’ve done a few posts about school but the main one that tells the whole background story is here   https://thepdaway.blogspot.com/2022/04/school-refusal.html But if you’d rather dive straight into this post then I’ll start with a recap. An EHCP was granted in 2022. No school place available until the following year so he spent a year at home with one hour a week MindJam as an Alternative Provision. I didn’t complain or make a fuss because Little C needed time to recover from the mainstream experience and we had other concerns back than that we prioritised over his education.  So then we attempted reintegration at the new setting in September 2023 but this didn’t work out.    Little C had already developed major phobia over anything school or learning related and we ...
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Arrrgghhhh, and breathe

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I always over-think how much I should share in my blog posts. I want to be really honest about everything but at the same time keeping privacy for the boys and from those people who know us personally. When things are tough it makes it hard for me to update my blog as I want to say everything; to get it all down on paper if that makes sense. I hope I get the balance right. So Little C’s EHCP journey is still ongoing. Pushed forward by a Stage 1 and Stage 2 complaint. The annual review has been done. It needed a lot of work. I had to do it myself - I can see why people pay a professional to do this part. Most of my amendments were accepted and we are just coming out of the 15 day ‘consult with schools’ period. Why are they consulting with schools?? I’ve no idea. I was told that they ‘had to’, part of the process or something. Next it will go to panel. The Panel will decide if he will be offered a place at a school or if we get our EOTAS (education other than at school) request agreed. ...
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King of the Castle

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Not sure where to start with this blog post as I post so infrequently now. Life is filled up with all the usual - family, work, home   stuff but with the added challenge of our Little C and him being home all day.   Having Little C home all day is hard as he needs a really high amount of attention. Not easy when myself and Little C’s dad are trying to work. I absolutely love my job, just a few hours a day supporting other SEN families. I’m so lucky to have landed this role and it gives me structure to my day (structure I was missing when I didn’t work). We juggle our jobs as best as we can and it’s working for the most part. We are just missing that little bit of respite that we both desperately need. Little C is, of course, super happy with life’s arrangements of not going to school and instead being home with mum or dad all day. He is making steady progress in lots of areas. We get out a bit now and Little C can often go to new places and meet other children - always on his ...
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The single second of a photo

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Do you ever look back at photos and find a picture that captured a moment that to the outsider looks so perfect but you know it wasn’t?  But in that single second it looked perfect. One family photo springs to mind of us all on a sandy beach a few years ago - big smiles with the sun and Welsh sea behind us. But the truth behind that photo is actually a pretty disastrous trip. It started with a difficult car journey (car sickness), then nowhere to park and Little C’s dad doing that dad thing where they get really angry at the fact there’s nowhere to park. So we end up driving up and down the main beach road for a good 30 minutes, debating whether to give up and go back to the caravan, until we finally find a space. Next came the cold wet sand (it didn’t look wet), then after 10 minutes of shivering on the wet sand we noticed all the other families packing up to leave and we then realised that the tide was very quickly coming in. Before we left I took a photo of all of us. We’re smil...
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It’ll be worth it

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We are in Wales as I write this. Spending a week at Little C’s grandmas caravan whilst work on our kitchen is being done. I was under no illusion that this would be relaxing. But we are on our third day and so far it’s mainly consisted of arguing, bickering, crying and sulking (all of us, not just Little C!). But in all honesty there have been some really good parts too. Little C took a full day to get back to being his normal self after we had arrived. So day one was particularly hard as he could barely speak due to stammering and he was either angry or completely closed off. Going to the on-site arcades tipped him over the edge (rookie mistake on my part). It was a really hard day. Even though his ‘usual self’ is boisterous, noisy and demanding- it’s a relief that he’s back to this. My solace has been walks on the rocky beach, even in the rain, looking for stones and other interesting finds. Little C’s dad has been out running most days.  We had a family game night last night (wh...
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Picky eating or ARFID ?

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  Something that has always worried me has been in the news recently so I thought I’d share my thoughts a little. Not only to spread some awareness of this particular disorder but also in the hope that by putting it into words it might help me to stop thinking about the awful story.  A little boy, of similar age to Little C, died recently after his heart stopped suddenly. The little boy was autistic and had ARFID (Avoidant Restrictive Food Intake Disorder). It is thought that the boys heart could no longer sustain his body’s requirements. The professionals involved didn’t acknowledge the boys lack of food intake and he was just referred to as being a ‘picky eater’. The story is heartbreaking. His mum could see he was losing weight and was barely eating at school but no help was offered despite her raising concerns about his food intake and weight loss.  I think this article will cause concern to many parents who have autistic children. Little C is most definitely a picky ...
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