Sunday 14 January 2018

Rebirth

I know it has been a long time since I posted here.  Like everyone, we have been through a lot of change and life experience in those years and months.  Bleak times drew me in and threatened to consume me but we have come out the other side, have survived and are stronger despite (rather than because of) our experiences.  I thought now was the time to resume this blog and help not only myself with processing but also give hope, a sense of a future and advice to others in similar situations.

In terms of catching up, here's a precis of where we are!

Me - returned to work on a part time basis as a community paediatrician.  Have had some time off but a structured return to work package was successful and I'm now at full capacity.

Husbeast - changed jobs a couple of times, far happier now in hip and trendy Shoreditch.  No sign of a hipster beard or man bun thankfully!

James - big changes ahead.  Can't believe he's 14, nearly 5 foot 10 and wears size 10 shoes...  Wonder if he'll ever stop growing?

Bea - started high school this academic year and is flourishing.  Has a working diagnosis of ADHD which is probably compounded by mild ASD

Edith - 7 earlier this week!  Pinch myself when I realise I no longer have a "baby".....


For the last four years, James has been at a fabulous National Autistic Society run school, attending on a residential basis during the term time.  He has made so much progress over that time - he's nearly toilet trained and his language is gradually increasing although mostly as he learns new foods! He's been accessing horse riding lessons which he's loving and his self help skills have rocketed - he can make himself a glass of squash, can butter his toast and even complies with a wet shave.  Five years ago I wouldn't have believed much of this was possible.

That said, his behaviour has continued to challenge us more than I could ever have imagined.  I think every parent struggles at times with coping with the curve balls our children throw at us, but the constant 24 hour care James requires has been more than a family of two adults can cope with.  After a particularly testing two week half term in May 2016 I experienced a severe decline in my mental health and it was clear that we could no longer manage his needs in a family home. It was becoming unsafe to care for him alongside the girls and I was constantly in a position where I was choosing to neglect my girls' needs due to his needs.  There was no way that we could provide the support at the level he needed in our home.  So with a heavy heart, tears in my eyes and a confused and distressed brain I approached the local authority to request more help.  I knew what I wanted this help to look like, James clearly needed a 52 week residential placement at a school similar to his current placement.  With support and intervention he has leaps and bounds of progress ahead of him, as evidenced by the way he has progressed at Radlett Lodge.  His fate was put in the Local Authority's hands with my oversight.  

If I went into detail of our journey over the last 18 months in one blog post no one would read it.  I promise to drip feed you all the ins and outs of the ups and downs over the next few months.  Yes, we had to involve lawyers and went through an educational tribunal but we'll cover that in a dedicated post, I promise.  

So where have we ended up?  My appeal to tribunal was upheld and our decision was turned around in less than a week.  My position was totally supported and I feel like for the first time in our lives, I have been listened to and James has got exactly what he needs.  We are currently going through the transition process for James to attend Priors Court School.  So much joy to actually be able to type those three words.  So much to celebrate.

Watch this space. This is not the last you'll hear from me.

That said, none of this came without cost.  I have launched a crowdfunder project to try and recoup the massive financial hit we and James have taken over the last 18 months.  If you read this post please click on the link to read more.  And feel free to share both the blog and the crowdfunder site.

Talk soon

1 comment:

Unknown said...

I'm so glad this story has a happy ending. All the best for the future x