Wednesday, 15 July 2015

All change please, all change.

What just happened?

I was braced for a fight, I had logged all the communications, I'd read up on legalities and getting what you want from an EHCP (Education Health Care Plan). I was trudging the anecdotal evidence on blogs and websites. Then the phone rang.

'Just a quick call to let you know that your draft EHCP has been sent to the school of your choice and they are happy to take her full time from September.'

I'm confident that my shock was evident.

I mean it's brilliant, we are thrilled. It's exactly where we wanted her to go. It's a specialist school which we loved when we visited, it offers so much which will meet Mojo's needs. It's bright and colourful and I'm sure this isn't on the list of Ofsted requirements but it has the loveliest 'vibe'.

After first day of nursery

But to find out in mid-July has meant that our existing provision, and I mean ALL of our existing provision is changing. I can practically feel the carpet being whipped from under us and if you'll forgive the stretching of the metaphor, the fact that it's being replaced by an equally comfortable, bigger carpet is, at present, little consolation.

With less than a week's notice Mojo attended her final Small Steps before 'graduating'. Small Steps has been such a source of support for us, firstly from a practical perspective with the classes giving us the knowledge and skill to best facilitate Imogen's physical development. Secondly and as importantly from an emotional perspective. We have felt like part of a family and part of something very special. We have attended for almost two academic years and all of us have changed so much in that time. We will miss the sessions and the people very much.

Then there's nursery. Just as she's found her swing and fully settled we have to be on our way to the next setting. I was very happy that the when I picked her up on her last day she had had her best day yet, laughing, talking playing and generally having a ball. It didn't, however, help my feeling of whiplash at the speed of this transition. Nursery has been so fabulous, Imogen has progressed so much with her confidence, her verbalising and developed other new skills like identifying letters and words, significantly nursery has given us both our first independence from each other which stirs conflicting emotions but I know how vital it is for her, that we both be able to let go!

After last day of nursery!
Moving to a specialist school means all our therapists change. We will no longer see our amazing Physio who has been with us since Imogen turned one. We will have new occupational therapists and new speech and language therapists. In fact you name it, it's changing. I'm nervous about change. Change brings uncertainty and uncertainty is well...stressful. I try and limit the number of what ifs floating around in my head at any one time but all this change has really opened the flood gates for what-if related spirals.

As if all this change isn't enough, Daddy has also changed his setting which involved a little less form filling, box checking and waiting and slightly more interviews and long discussions. The whole process reminded me of the pressures he is under as 'bread winner' I get along with my days working harder than I ever did as a paid employee not really thinking about who will pay the bills (excuse pun!). Watching him dissect what a new job would mean for us as a team and how it would affect both our day to day logistics and our finances made me realise quite how much he has on his plate. I am deeply grateful to be married to someone who would worry quite so much about how his schedule will impact on his ability to cuddle his girls and make me a brew in the morning. Gosh I do so love him.

So for now we contend with our new morning routine (turns out making my own tea in the morning is a burden I can bear for the good of the team!) and we enter our limbo summer between old and new and we sit back and once again marvel at how grown up our girl is, and how accomplished and bright and spectacular she is.

Don't know how she does it?

It's one of the things that is said most often to me. By family, by friends, by people we meet out and about and get talking to...

'I don't know how you do it'
'I don't know how you cope'

Within the community of parents of children with complex needs the answer to the question is usually very simple. You have no choice, you do it, you get out of bed in the morning and you cope and eventually you're epic hard work becomes routine and therefore looks 'easy'.

My answer to this is a bit different. While I totally accept that the having no choice aspect is very true (certainly in the beginning), for me a far more significant factor is the team we surround ourselves with. In this instance I don't mean the professionals, the doctors, the therapists, the teachers, all of whom are without doubt making it possible for us to cope. I'm talking about the 'normal' people in our life. The people, in most cases, without any experience of disability to speak of.

We cope because our family embraced Mojo long before she was born. They adore her. They treat her just like the other children in the family. They meet her where she is at, whether that is physically contorting to ensure she is included or simply facilitating family time which is accessible without being contrived. We cope because when we wobble they are there, coping for us, coping with us.

We cope because our friends take Mojo in their stride. I don't mean that they 'accept' her or even that they include her because of course they should. What I mean is that they do so without awkwardness or fear in their eyes. They ask questions unapologetically about how to move her or help her. They talk to her at an age appropriate level and, believe me, even some professionals struggle to do that with Imogen. They don't bat an eyelid about sitting with her so we can have a break. They unflinchingly pass the sick bucket when she once again throws up her feed (in fairness that wasn't anything special that particular week but that's a whole other story!!).

So usually the answer to the friend who asks how we cope is, we cope because of you.