The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

Starting School

Both my boys will  be starting school in September.  They're not twins - there's 14 months between them ("Irish Twins" - it's called in our family) but Cheeky starts Reception at our local mainstream and Little H will start in the nursery class at our local special school.  Apart from the to-be-expected feelings of anxiety and melancholy of losing both my children to the state education system at once (don't you DARE ask me what I'm going to do with all the spare time - I'm sick of that question already), I'm actually a little excited for them both.  Cheeky is well ready for school, the child was born ready for school, and I expect he will thrive.  Little H is much healthier and has been making good progress in his development so I think he too will gain a lot from the varied experiences he'll get at school.  It has been a strange few weeks though, preparing for that transition.  There have been similarities of course - expensive school uniform for one (although, to be fair H doesn't need to wear one but I think I'd like him to).  However, it's the contrasts between the experiences that have been most striking. 

I chose a school for Cheeky based on the fact it was the closest Roman Catholic school and I'd taught there in the past so knew it well.  We had one visit to the school to look around and then applied through the online form from the local authority. I found out he'd been allocated a place at our preferred school via email in April.  

I rang the council for a list of special schools for Little H when he was just two years old.  Over the coming months I rang them all and asked about the type of children they taught then visited four of the schools most suited to his needs.  He had numerous assessments from local authority professionals (Educational Psychologist, Teacher for the Visually Impaired, Early Years Teacher) and a statement of special educational needs was compiled.  The process took a year. His papers were sent to the school of our choice who agreed they could cater for his complex needs.  I negotiated (with some degree of difficulty as they wanted him full time immediately) that he could start with a part time place and gradually increase it over the year to a full time place for Reception.  

Yesterday I met with the class teacher's at Cheeky's new school.  They provided information about the curriculum - literacy, maths, religious education - and discussed (in rather unnecessary detail, I thought) the school's behaviour policy.  They impressed on us the importance of education, ensuring good punctuality and attendance and the progress our children could be expected to achieve within the year.  We were given an example of the school dinners provided and told to ensure the children's clothes were named and their shoes had velcro on so that they could put them on themselves.

Last week I met with the school nurses at H's school.  We talked about his need for a 1:1 carer to be with him at all times and went through his epilepsy care plan.  The deputy head said (much to my delight) I could pick the days I wanted him to attend based on the lessons I thought he'd get the most from.  I'm planning to send him on the days he has hydrotherapy and time in the interactive-creative room.  There was a chart on the wall detailing the times, rates and volumes of the children's tube feeds.

When asked if we had any questions;
I asked Cheeky's teacher if there were after school clubs and extra curricular activities for the children.
I asked H's which hospital the ambulance took children to in an emergency.


Comments

  1. totally different experiences! I cannot believe they both go to school this year...
    Eilidh starts primary 1 this august and i'm apprehensive... with niamh I couldn't wait for her to go, she as so ready!
    while eilidh is bright, she is only 4 and a half and she's my baby - she is also disabled and needs a carer - she has been cared for for 3 years by her nursery and now I have to entrust her to someone else. the ehad of p1/2/3 says my worries and concerns are normal for a p1 parent... I hope so!

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    1. I think its completely normal to worry but the worries are just so very very different. I worry about whether cheeky will make friends and be happy, I worry that H's seizures will be spotted and dealt with appropriately. Of course I want him to be happy too. It's about trust though isn't it? It's 'trusting' someone else to be able to care for them as you'd want. It's especially hard when your child has complex needs like H and E xxx

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  2. Such exciting times for you and your boys, regardless of the fact that their needs are so different. I am sure that they and you are going to love school! :)

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    1. I am genuinely excited for them both (although still quite anxious too). I know they will both enjoy it and I'm sure I'll get used to being on my own quite quickly. Coffee mornings and pimms afternoons round mine anyone? ;)

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  3. Wishing you the very best for the transition of the 2 boys. I know it will be most difficult for you more so than the boys I guess. you will get used to it but try not to fret too much in the beginning. x

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  4. Thank you. Yes it's definitely more difficult for me than then- cheeky can't wait! I know I'll get used to it with time. Xxx

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  5. Just been catching up on your blogs hun. This one stood out to me as it made me smile that as parents we know our child needs so well and we all cross our fingers that others will too. xxx

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  6. Exactly Jane - it doesn't matter how complex those needs may or may not be, as mother's we know our children best. It's hard to let go and allow someone else to take such an important role in their lives.

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