Goodbye 2013 - what a year

2013 will be a year I never forget.  I find myself looking towards 2014 with unexpected positivity and clarity.  If you had asked me this time last year what 2013 held in store I couldn't have forseen the ups and downs of the year.  And I would never have expected to find myself looking towards 2014 in this way.

James was born in the winter of 2003.  A much wanted baby but a difficult delivery left me feeling out of touch with myself, my baby and my winter was dark and long.  Winter turned to spring, dark turned to light and I was lifted from a period of gloom until the seasons changed again.  Christmas became a time to relive a difficult birth experience during a period of little light and cold weather.

Then James' regression hit us.  The winter of 2006 was long and desperate - we had watched our son change from a lively, interactive, verbal 2 year old, no different to his friends, whilst he disappeared into a world we couldn't enter.  He stopped talking with us, then stopped talking altogether.  His toileting skills regressed.  We lost our little boy.  I mourned for my loss, all the while taking him to sessions with the psychologist, speech therapist, occupational therapist and paediatrician.  Our daughter's first Christmas was a sombre affair and we ate a basic meal, exchanged a few gifts and tried not to think about how different it was meant to be.  10 days after Christmas our paediatrician finally confirmed what I'd known for months.  Autism.

Since then I have never enjoyed Christmas.  Not only do we struggle to manage to choose appropriate gifts for James but we are unable to spend time with our family and the holidays are spent fireholding and seeming to lurch from one crisis to another.  Two winters ago, our Christmas was so stressful that my husband got to a point I had never expected him to reach.  I work with children on the autistic spectrum and from very early on could see that James was going to be on the very severe end of the spectrum and would need life long care for his entire life.  I had already accepted that at some point he was likely to need to attend a specialist residential unit, but had imagined it would be when he was reaching high school age.  That Christmas my husband began to state that he thought we were at breaking point (he was right) and that we needed to start the ball rolling towards a residential placement for James.

If I started to describe all that we went through in order to finally secure a place at the school he is now attending it would cover many chapters, so I will save those for later, and this is meant to be a positive post.  For now, I will say that the change in James since he started his placement has been profound.  And the change for our family has gone beyond anything I could have imagined.

This Christmas laughter filled the house, food was shared, Christmas trees decorated, presents exchanged, mince pies made, films recorded and watched, advent calendars opened, cookies baked, carols sung, cards written (OK, they were just my daughter's school cards and she never managed to take them to school but they were written which is a step forwards!), ballet watched, school and nursery concerts watched, family visited, chocolate eaten and wine drunk.   A near normal Christmas, something I never thought we would experience.  I've seen my husband smile more in the last few weeks than in the last few years, my 7 year old has thanked us for giving her a "normal" Christmas and my son is calmer and happier than he has been for years.  Given that Christmas is a real challenge for most people on the autistic spectrum, I was prepared for a less easy ride this holiday, but it seems that James has taken things in his stride and is showing himself to be the flexible, content, happy child we lost many years ago.

So to next year.  We know that James will remain in his current placement, given his fantastic progress report at the beginning of December.  I am dipping my toe back in the water of work - I've been on a long term career break since my maternity leave ended and am looking forward to the challenges that that will provide.  I feel like a door has opened and let light in to our home and it will remain open all year.

I won't miss 2013, but it is a year that has changed the shape of the future forever.  My future, my son's future, my daughters' future and my husband's future.

Coming out of hiding!

It's been a while hasn't it? The last 5 months have been quite a roller coaster but I think we're on a pretty even path now. No doubt there will be another major dip around the corner, but for now I'm going to enjoy what I have. Over my weeks of absence, I had moments where I thought I really was drowning, but the clouds have lifted and spring is in the air and with it the smell of hope, joy and life. Compared to this time last year my life is infinitely easier and as a family I think we are all happier.

I'm not usually one for list but I thought I'd just wrote down a few of the issues that contributed to my absence! They're in no particular order, just as I remember them.

Renal colic - at least this bout didn't require 3 days in patient management. I was mortified at having to call an ambulance but I couldn't have taken my husband and the two children (unfed!) to hospital at 730 in the morning. The ambulance crew were not impressed when they saw how we had to secure the door behind them - a dead lock, chain and 2 stair gates were seen to be putting them in potential danger as they wouldn't have been able to escape easily. I had to point out that if it were not for these measures, our son would be well known to the local police and possibly the ambulance crews....

Infected blisters (severe enough to develop into an abscess which required draining and a course of antibiotices) caused by ill fitting shoes - sorry Clarks but I won't be using your shoe fitting service again. Luckily there is a fantastic service run by Footling where a qualified fitter comes to your home and measures your child's feet. I will never take James to a shoe shop again!

Severe crush injury to Bea's fingertip - sustained on the day that my husband was rushed to hospital (see above). So having told him we couldn't possibly accompany him, we ended up having a jaunt to the A&E department anyway. Luckily it wasn't fractured, although it has taken a LONG time to heal. I expect a call from social services any day now as Bea has had so many A&E attendances over the last 6 months. It is both a reflection of the fact that she is a second child and that we are often preoccupied with keeping James out of danger that she attempts rather brave and foolhardy stunts.

Full time school starting - although, to be honest for the first term James didn't make it through a full week as he caught so many coughs, colds and infections that he was either sent home or kept home at least one day a week before Christmas. The school is amazing - James is so happy there and is making so much progress it makes my heart leap with pride. To think that we were beginning to think we would never hear him talk again when his regression was at its worst.

My return to work - it's not been without hiccups and difficulties, but I am starting to get used to being at work one day a week. More about work another time though.

Christmas - the most stressful, difficult and downright miserable time of year for us. I find the whole thing just gut wrenchingly awful, as if someone is taking my soul from me every day for weeks. There seems to be no end to the festivities and wishes of a happy and peaceful Christmas, and few people truly understand why I find it so difficult. Next year I'm planning to build a den and hibernate. I'll go in in November and come out mid January.

I think that those are the major things. But as I say, things are brighter and better now, and I feel we're coming out of the fog. I hope I'll be around a bit more now.