However, I was not prepared for the adventure of getting Zachariah an EHCP ready for school.
Thinking about school alone comes with too many questions, worries and unknowns, so add in a legal document and I’m totally thrown.
For those of you who haven’t reached this particular milestone, I’ll enlighten you a little bit.
An Education, Health and Care Plan is a fairly sized pile of paper consisting of reports from professionals, aspirations and goals from parents and outcomes developed from all the information.
It’s a document that should clearly state the needs of your child and how they are going to be met.
Sounds pretty awesome doesn’t it?
And to be fair, it is, when everything is correct and both parents, professionals and your local authority are on the same page.
But reality is, it can be a very stressful process, full of reading, re reading and reading again, then highlighting everything you are not too sure about.
You end up fighting for things to be in it, amending adjustments and feeling unsure if it completely represents what you want/need for your child.
It can be an extremely emotional document and hard to digest too.
I particularly found it difficult writing Zachariah's hopes and dreams for the future.
My ultimate goal for my son is for him to be happy and healthy.
So, when you are living a battle with health and you are losing a lot of the time, it can feel like such a distant goal.
And of course, not forgetting the constant battle with happiness, as like many other children with life limiting conditions, if they're not 100%, chances are they are not happy.
So straight away you know you are setting ‘hard to reach’ goals.
But the emotion doesn’t stop there.
As I’m sure I’m not alone when I express how difficult it can be to see on paper what your child can and cannot do.
I have often expressed how much I dislike graphs which put my son in an age bracket, and how degrading it can be to score my child against other children when he has so much to battle with on a daily basis.
It is another document that highlights your child's difficulties.
But on the flip side of that, it's extremely positive too.
Showing what your child has achieved and goals that seem achievable.
It celebrates them and acknowledges their triumphs.
It is also the most daunting document a parent can face, and this is because of its importance.
It’s a legal document.
In my understanding, it is your child's safety blanket, which protects them of their rights and needs.
It is a clear plan which shows everyone's involvement, including parents/carers.
It is there to protect families, but also professionals /schools.
It is to make sure the team around each family are on the same page and working together, with the interest of the child at the centre.
Because it is legal and vital, it can scare many parents, I for one didn't feel qualified to be such a key role in bringing this document together.
I felt overwhelmed and felt I couldn't get it right because I lacked knowledge and expertise.
I also had no idea how important it was until I received the first draft.
There doesn't seem to be much preparation for it, and definitely little guidance on how this document should look at final draft.
Parents are almost left in the dark until they receive the document then expected to understand and be happy with it in such a short period of time.
Don't get me wrong there is help, but I almost feel like you've got to seek out that help and be aware at that time of your options.
I also feel you need confidence to speak up and discuss it.
So, if you are in a bad patch, as I like to call it, it may be difficult to have the capacity to think about this and have energy for it. As I know I'm not alone in the sleep deprived club.
For me, I've absolutely struggled with this whole process from get go.
And without going into too much detail, I've found myself feeling let down and confused.
Luckily, I have a great network of friends who have been able to guide me, but this has still come with its difficulties.
Getting the EHCP at such a difficult time in our lives, has definitely made this harder.
As I've been so caught up in grief, after losing my 2nd child, that I've been unable to find the capacity to give my all into getting the EHCP as right as possible.
I mean, where has 20 weeks gone? I fear that many others also have this struggle with the EHCP and wonder how many are left confused.
I'll finish by saying that the EHCP is an incredible thing, and such an improvement from the where we were before. It is not meant to be hard work, but there as a positive thing for your child.
Much love, Rochelle (My Daily Miracle)