Monday, 30 December 2013

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.

Saturday, 14 December 2013

Long silence

It's been a long time since I found myself here and shared our experience of "Living, not drowning" with you. It's only now I realise that's because we were literally drowning.

Our battle was long and hard, and many would have fallen, but our inner strength and determination to access the essential level of help and support for our son was the driving force that kept us going.

In September this year, 20 months after raising the issue first with social services and then with Education, our son started a termly residential placement at an autism specific school.

Our lives have turned around, but most importantly HIS life has changed beyond all recognition. He is a different child, still very active and difficult to keep to task, but his level of motivation to be involved in class and lifeskills activities is so uplifting and makes every tear I shed and every ounce of anger and frustration I felt worthwhile. He looks so settled and happy and I feel like he feels he's at home at his new school. The staff can't get enough of him, and are always happy to chat to us and tell us what he's doing/eating/playing with/destroying! I get regular weekly reports from his class teacher and last week we went to his first review meeting. I was so proud of James - every report from every therapist, teacher, carer and support agency was full of positivity and he coped well when his routine was disturbed and he came to see us (the chocolate biscuits I'd stashed away in my bag might have had something to do with that!). When the case officer from the LEA was asked if she had anything to add, she said she had never been to such a positive annual review which delighted me at the time.

It is only now that I think back to that statement that I am appalled. The annual review process is meant to show that a child is achieving his or her potential and should be positive. It's an opportunity to review progress, set goals and discuss areas of need. It shouldn't be doom and gloom otherwise that suggests the placement isn't right for the child.

So I come back here, because I can't help thinking about all those other children who are being let down by the services who are meant to provide for them. I will expand on our experience of the last 20 months from request to placement over the next few weeks and hope that it will help others in a similar situation.

My silence is broken and I need to spread the word!