Moving on...to school

Alfie is 4 now and due to start primary school in September this year.  The last 4 years have gone so fast and I’m not sure I am prepared for him to go to school yet!  Aside from the normal parent fears and emotions surrounding your child starting school, we have a whole load of stuff to do before he starts!

Alfies pre-school have been so good at looking after his needs that I worry that no one at school will match up to them!  Navigating the system can be complicated and we are currently in the middle of making sure that Alfie has everything in place that he needs ready for September. 

Because Alfie has mobility issues as well as needing skin care throughout the day, his pre-school suggested that he should be referred to the Early Years Forum and they would be able to offer some input into producing a care plan for when Alfie goes to school.  The referral system takes a very long time and is quite complicated so I was happy that I had support from staff at Alfies pre-school who have helped navigate the system!

We submitted paperwork (lots of it!) including reports from all of his various medical professionals and it was decided that Alfie should have an Educational Health Care Plan (or EHCP).  The process was started in October and we finally saw someone in May to produce a report which will feed into school in order for the care plan to be drawn up.   At the meeting in May, Alfie was observed in pre-school and then I had a half an hour appointment to say everything I needed to - which is not very long when you consider the complex nature of ichthyosis and the fact that the people dealing with his case would probably never have heard of it!  I wrote 3 sides of notes on A4 paper to prepare for this meeting to make sure that everything was covered. 

We now have a transition meeting between the pre-school, primary school, me, regional SENCO and the educational psychologist who produced the report and between us we need to make sure that everything is covered in Alfies care plan.

I have heard so many stories from other parents about schools and ichthyosis that I am determined to have a smooth transition between pre-school and school.  I know some of the pitfalls and issues that other parents have come across and hopefully I can navigate my way around all of those!  Having visited the school and from speaking to the head teacher, I feel confident that they will be accommodating and will look after Alfies needs.

But I still worry!  I worry that he won’t be looked after as I need him to be, I worry that he will get hurt in the playground, I worry that other children may be mean to him, I worry that he will be exhausted by school (he is so tired after2 days of pre-school and still naps on days when he is at home!).  I worry about everything!! I know Alfie will enjoy school because he is intelligent and hungry to learn new things.  But I worry about the effect it will have on his health.

Alfie will most likely need someone to be assigned to him to look after his needs.  He will need someone to apply creams, administer dressings and bandages.  It will need to be someone who Alfie likes and trusts and who is in tune with him enough to notice when he may be uncomfortable, sore or is starting to overheat.  The person responsible for Alfie needs to recognise those little cues that so many people wouldn’t notice.  Ideally I would clone myself! I know I have to relinquish control (again) and let someone else take care of my boy whilst he is at school in the same way I had to when he started pre-school but for some reason starting school just seems so much harder!

Like everything else though, we will find a way of making school work for Alfie, we will make sure he gets the care he needs while he is there and we will find ways of allowing him to be involved in everything that school has to offer.  But I am a mum and I will worry about him forever!