Saturday, 13 September 2014

Progress

Little steps forward mean so much.

I never assume progress will happen for James so when it does I'm stunned and happy. And I celebrate very step with the same wonder and awe that a new mum has on seeing her child's first smile.

This week our progress points are:
Nails cut - tick
Toileting improving - tick
Requesting chill out time when overwhelmed in his classroom - tick
Transitioning back to school after the holidays - tick

We will go for our fist visit tomorrow and I'm really looking forward to it. I miss his cuddles and squeezes though it's been lovely to get a guaranteed full night's sleep!

Saturday, 6 September 2014

Ready, steady, go!

Over summer I started making some major career decisions. Having returned to work one day a week after a four year break I found a changed NHS with reforms still ahead. Morale is variable, staffing levels patchy and workload more intense than ever. Faced with the challenges if providing an out of hours service and managing my caring responsibilities I struggled to see how I could continue on my training role. Then last week I spent three days in the induction for community training.

I am shocked at how three days have changed my expectations, plans and desires. I have a fire in my belly that hasn't been there for years. I want to complete my training, regardless of the difficulties ahead, and be out there making a difference for families like my own. The acceptance of a non career/non training post would mean that it would take years to probe myself. How do you sit in a meeting with budget holders and persuade them to find your new, innovative service if your title is misunderstood and seen as carrying less kudos. As a consultant it's clear who you are, how long you've trained and what you stand for. As a staff grade you are virtually invisible. You're still doing the same work, dealing with less bureaucracy but your battle for change is longer, harder and tougher. I feel the passion for my work coursing my veins again, I feel my brain ticking over with idea and I feel as though a fire has been reignited. I think I'm ready to give this a go. I'm under starters orders....

Friday, 5 September 2014

Little things

"Little things mean a lot"

I couldn't put it better if I tried.

My child development work focuses on seeing children who are experiencing difficulties in one or more areas of their development. The more I learn about "normal" development, the more amazing it is that things go right most of the time. The brain is such a poorly understood organ, difficult to really get a handle on, perhaps we need to look outside the box and ask how come everything has gone right rather than trying to focus on what has gone wrong! So much of what young children learn is done instinctively - we don't teach our neurotypical children to use gestures and point, they pick it up almost by osmosis. The same goes for language - we don't actually coach and "teach" conversation, it's learnt through observation, modelling and trial and error. For James, all of these early foundation steps are missing and I look at his development through very different eyes. Each step in a task needs to be broken down and taught individually - I am an expert in backward chaining now (an approach where you teach the final step first and then once that is mastered, the penultimate step). It's a very drawn out approach but when a skill is finally mastered it's cause for celebrating. If you've had to teach your child to out on their socks over the course of four years you're going to be ready for a party when they've finally "got it"!  It also means I'm bowled over by my girls' achievements in a way that other parents don't experience for their neurotypical children. I am stunned that my three year old can write the first letter of her name and that my 8 year kid can make a full packed lunch. Sometimes I fear I have lowered my expectations for my subsequent children as a result of a James' challenges and sometimes I'm guilty of having expectations that are too high. Getting the balance right is tricky but I celebrate all the small steps that each of them takes in ways that I would not otherwise have done.

Little things mean a lot.

Thursday, 4 September 2014

What a difference a year makes

365 days
52 weeks
12 months

However you look at it, it's a long time. And it's been a very busy year with ups and downs and lots of action. Last time I wrote, James had finished his first term in his new school - he's just started his second year!

How fast the year has flown and how much he's achieved in that time never ceases to amaze me. As I dropped him off yesterday, I reflected on the things that seemed unlikely a year ago - he now (occasionally) takes himself to the toilet, he assists in most activities of daily living with a persistence st tasks like dressing that was not there previously, he is showing more awareness and understanding of his environment (sometimes unwelcome - when I finally realised he was able to take the key for the back door out of the drawer and try and unlock the door I had to quickly think of a new hiding place!), he eats sandwiches (have you ever tried making a packed lunch every day for a child who doesn't eat sandwiches in any form?!), he has learnt to use a "regular" swing (the sight of me trying to manhandle a child of over 5 foot in and out of a bucket swing designed for toddlers is no doubt amusing for onlookers but not much fun for me or James). His communication is better and more reliable although his vocabulary hasn't extended much beyond food. He is still the happy, energetic boy who gives the best hugs in the world and being away at school has only changed things for the better. I never doubted that but the purse holders seemed to think it would be detrimental to his well being. Where are they now?  Most of them have moved on to other posts which is probably just as well as I have returned to work one day a week and am now ready to empower more families to kick them into action!  I feel ready to support those who have no voice and my experience and knowledge can only help them.  I feel ready for battle again and whilst my own is won (for now) countless others are still to be fought.

Let battle commence....

Tuesday, 7 January 2014

A new year

This time last year I honestly thought that things could never improve.  My son was in the local authority's school for children with severe learning difficulties, in a class that was specifically designed to be tailored to the needs of autistic children yet his behaviour were showing no progress.  Issues that had previously been dealt with reared their head again and became increasingly difficult to manage - for instance we couldn't cut his hair or nails, he was waking at around 0430 and not going back to sleep, his eating was becoming more faddy.  Increasingly he was intolerant of other people around him, leaving the room the moment anyone else entered, refusing to sit at the table for any part of a meal, coming off the trampoline if his sisters tried to get on.  He was disappearing further into his distant world and we felt more and more detached from him.

It is hard to really feel the love you know you have for someone when you are having to pin them down to change their third dirty nappy in an hour, or when they have pinched you or bitten you hard enough to draw blood.  When you escape into another room for some respite from the constant screaming, just closing the door brings a sense of relief yet it is coupled with guilt that he's only screaming because you aren't providing him the sort of stimulation he needs.  But there are only two of us, and two other children in our family and we have no support other than the limited amount social services will acknowledge we are "entitled" to.  How on earth could we keep up the amount of energy needed to provide around the clock stimulation and support for James whilst keeping our family together?

Frequently over the last 12 months my husband and I have alluded to our "team".  But at the lowest point, when the stress of dealing with all that we have been given was overwhelming, I wondered whether there was any point in being a "team" when you never worked together.  We were two parents who had three children, but we parented them separately.  I would take the girls out of the house to give James the space he needed, and spend time doing things with them.  David would look after James and if I could organise an hour or two of respite he might fix the shelves that James had pulled off the wall or prune his roses (I know!  talk about priorities) or change the wet sheets.  Or nap.  Napping was David's favourite pastime.  I couldn't talk to him about it, but I know he was very depressed.  This wasn't living, it was surviving.  I should have started a new blog - not drowning, just surviving...  We barely saw one another all weekend.  If David needed to go out to the shops for DIY tools he took one or both of the girls as it became increasingly hard to look after James with either of them around.  In fact, I argued to social services and education that it was dangerous to be left in sole charge of James and his two year old sister as you couldn't change her nappy safely as you would have to leave him for more than 45 seconds.  I developed a method of changing her on the kitchen table which allowed me to block his path to the fridge/sink/hob.   We lived for the weekends when James went to his respite carer. He would stay two nights but as he came home at 10 on Sunday it was really only one full day that we got a glimpse of what being a "real" family was like.  I secretly dreaded our respite weekends at times, because afterwards I felt so low, having seen what could have been.  I don't regret our decision to have children, but I constantly grieve for the life I expected to be offering them.  I thought I'd be the mother baking cookies, watching my children participate in sport and dance/music/drama, managing a part time career, taking occasional holidays, watching my husband play with our children and basically being "normal".  Even when James was diagnosed I imagined life would be hard but we would weather the hard bits and be rewarded for our work with positive happy times in between.  How different things turned out.

In January last year it had been a year since we had requested a reassessment of James' needs as we felt that they were not being met at his current school and he needed the waking hours curriculum support that a residential placement would provide.  I had known for a long time that at some point James would need to be educated in a residential setting but it wasn't until David began to mention residential schooling as a viable option that the wheels were set in motion.  Until that point it hadn't been necessary, but when David said he couldn't see himself coping for much longer I knew breaking point had been reached.  To find ourselves a year down the line with no progress was soul destroying.  We had worked and worked and worked, we had bared our souls to the professionals who were meant to help us, we had shouted, we had cried, we had to access couples therapy just to see that there was a light in this tunnel of darkness.  Meetings were happening behind closed doors (so called "professionals meetings" - this will be a whole blog post of its own) yet we were not party to those discussions or decisions.  We have never been informed of the contents of those meetings nor of the outcomes.  I still find that distressing, that discussions about our family's future are held without any opportunity for our side of the story to be honestly represented.  It makes no sense - even in child protection conferences we invite the parents into the room, allow their story to be told and heard first hand.  Yet in decisions about a child who has no voice, no advocate, no way of making their needs heard, the family are not allowed to speak.  I wouldn't take a medical history of a child from their health visitor and make a decision about giving that child treatment without seeing the child and their parents.  Yet every day, behind closed doors this is happening.  Decisions are made by people holding purse strings, working for the local education authority and social services, without the full facts, without seeing the families involved.

Somehow, at some point, after we'd been through 18 months of bleak, dark, consuming misery, we had a meeting with the "right" person - I was starting to emerge from the darkness and found strength that I didn't even know I had and ripped all the arguments they threw at us to shreds.  I presented them with black and white evidence that they simply couldn't refute and I knew as we left the meeting that there was finally a light.  David had said virtually nothing throughout the meeting, mainly keeping an eye on Edith, but in the car he told me how proud he was of me and I cried.  It was the first time in a long while that I'd felt appreciated and loved.  There simply wasn't time in our days to make space for each other.  I began to feel as though we might just make it through unscathed and together despite the best efforts of those around us to rip our family apart.

And then I broke my ankle.  A proper break.  No weight bearing at all for 8 weeks.  How one looks after a toddler with a broken ankle is beyond me.  Edith had to stop taking a nap as I couldn't get upstairs.  I had to change her nappy on the sofa next to my enormous plaster cast.  I couldn't take her out of the house as I hadn't enough upper body strength to use my crutches safely.  So how does one look after a non verbal severely autistic child who requires one to one support at all times?  Once again, we were failed by social services who failed to acknowledge the severity of James' needs and as a result offered us one night of extra overnight respite.  When I demanded someone came to the house and made an emergency assessment I was initially dismissed and told it was unnecessary.  It wasn't until I told the duty social worker that my children were all at risk of immediate harm as I was unable to look after them that they agreed to assess the situation.  The sad part is that we aren't a one off case.  Daily parents are told that they're not entitled to assessments or support when this is simply not true.  If this blog is read by just one person who is enlightened in the methods that those people who are meant to support and help use to keep services away from those in need, then my hours in front of the screen are worthwhile.  Never accept no for an answer.  Never believe that there is nothing that can be done.  Ask for evidence to support their claims that it is not their remit to provide support.  Because more often than not you are right and they are wrong.

We enter 2014 not fighting for anything!  I can't quite believe that.  James has a placement at a residential school during the termtime and we have a support package that allows us to ensure his safety and stimulation during the holidays.  We have had more sleep in the last four months than in the last four years.  I can't remember a happier Christmas.  James is making progress for the first time in years.  I saw my reflection in the mirror and found a smile on my face.  I think this is going to be a good year.














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!

Friday, 4 May 2012

The wound

I have this wound. It has been there for years, never properly healed, scanning over but never given enough chance to form enough new tissue to recover completely. Sometimes the scab gets knocked off, unexpectedly, unavoidably. Sometes I deliberately pick it, to see if it still hurts. It does. It hurts as much now as it did when it was fresh and new and I was unscarred, untainted. Sometimes it just opens for no particular reason. Blood everywhere when I'm least prepared for it. Occasionally it gets infected and I worry I'll have to cut my arm off. How will I manage? What will it feel like? Once open and sore it takes a long time to reform the scab, the throbbing pain a constant reminder, the affect on my functioning a sign. What caused this injury? Why will I never heal properly? What can possibly hurt this much? Surely there's something that can be done? Is there something wrong with me that makes this so painful? Why? Autism.

Thursday, 3 May 2012

A very worthwhile appointment.

So my journey towards securing a decent future for my son continues. I have started looking everywhere and anywhere for support for our case. I think that the stronger our arguments for a residential placement for James are, and the more knowledgeable professionals we have supporting us, the easier it will be in the long term. Right now it feels incredibly all consuming and engulfing.... I went to see James' paediatrician today. I took Edith but left James at school - they've only just returned after Easter so it would have been too disruptive for James to come out of school, but also impossible for me to talk with him there. I was close to tears as I described the witch hunt that has been going on with regards to James' welfare. He agrees with us that Janes is not in the best educational setting for his needs and that he will need lifelong care. It's a hard conversation to have, both as the professional delivering that message and as the parent sitting on the other side. All too often we shy away from the truth, feeling impotent and helpless with no good news. As a medical student you dutifully attend the seminars in breaking bad news, usually to an elderly patient or spouse but little is discussed about dealing with these sort of consultations. The feeling can be akin to one of having that handed the parents a life sentence with no hope for a pardon. It's emotionally draining for the person breaking the news. Imagine how it feels to be on the other side of that consultation. Hearing that the longed for baby you laboured hard for, nurtured constantly for years, loved unconditionally, fought for, watched with a deep pain in your heart as they disappeared into another world as autism took over their young body, will never live alone, never have a meaningful relationship, never produce grandchildren, always need the support of another adult is very painful. The grief has to be processed yet again. I live with this chronic sorrow surrounding James' diagnosis, and every so often the pain intensifies as another blow is dealt. But I have to see the positives in everything, and at least the professional opinion of a highly experienced and well respected paediatrician will strengthen the case for us.