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

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!

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....

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.

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....

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.

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.

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!

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.

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.

Ray of light

Sometimes things have felt so dark and bleak recently that I've wondered if I'll ever feel happy again. I feel dark and desperate, cold, lonely, isolated and without hope. I feel angry - angry that this is my path, angry that I can't "make it better", angry that the very system that is meant to help us and support us is failing us and angry that I'm made to fight so hard for such minor changes. The system is stacked against the most vulnerable - how can it be fair that those most in need have to shout loudest? Why shouldn't my son be given the opportunities that are denied him through us receiving insufficient respite and hence feeling too exhausted to contemplate outings and visits that require immeasurable amounts of energy and planning to set up? Why should I live in a house that is slowly being literally torn apart with no opportunity to spend time repairing and replacing? Easter is a time when many families spend the dour day bank holiday getting on with some DIY. Or planning a kitchen or extension. We spend our time picking up the detritus that James leaves behind him, akin to Hansel and Gretel following the trail of stones. Any respite we do receive over this period is tinged with feelings of guilt, after all as social services are constantly telling us, the Carers all need a break too and "we" have to look after them. But who looks after me? Who helps us when we're physically incapable any more? No one. It can feel as though no one wants to listen to those who are experiencing the intensity of looking after James first hand.

Today there was a chink of light. A glimmer of hope. The promise of more to come. Perhaps we will see daylight again. 2 years ago I was lucky enough to be referred to one of a handful of practitioners offering a relatively new therapy for children on the autistic spectrum. Today she came to visit us at home, to catch up with James' progress and offer us assistance in any way she can. After explaining where we are with social services and the LEA (and after picking her jaw from the floor!) she has offered to write a letter outlining her findings of her assessment over the last 18 months. It will be a candid letter, emphasising that James' impairments are very severe and that he has extremely challenging behaviour (both of which social services deny) but also outlining the fact that with the appropriate support and input he has a lot of unfulfilled potential and he needs the right environment in which to access this in order to develop lifelong skills. This could be the letter that makes the difference between a full tribunal with battles from both sides and at least some concessions from the LEA that James' current school simply can't meet his needs. I can only hope...

Stalemate

Since my last post, we've had a very interesting meeting with social devices. Unfortunately it was clear that the CWDS are stuck firmly in their belief that we are failing James, an accusation I find insulting, upsetting and unfounded. Their claim that we fail to integrate James into our family couldn't be further from the truth, in fact, every single aspect of our life revolves around James - what time we get up, what food we eat, where we can (and can't) visit, which friends can visit and when, what car we drive, when we wash a load of clothes... Whether James is at home or not, every decision I make (including the timing of loo visits!) is dictated by him. When asked to back up their accusation they used a very poor example that just shows how they have failed to understand James and his level of disability and the impact it has on the whole family. The last time a social worker visited our house it was our carer's birthday. Bea decided to make a card for her and wrote in the card and signed it herself. Apparently when I was asked whether James would write his name I replied that that wasn't appropriate as he couldn't hold a pencil let alone sign his name. Apparently this shows how we don't integrate him into our lives. I sat wide mouthed and stunned. They would rather I had forced him to write in the card, hand over hand against his will? I didn't make Edith sign the card and her functional level is around the same as his...
Other parts of the discussion were equally distressing. Their minutes from our last meeting are inaccurate and full of omissions, so I'm glad we took our own advocate to take notes. She happens to know James very well so could back us up on our views about James. There was some recognition that we struggle to care for James, two younger children and ourselves but no offer of further help or assistance. It has been over three months since I requested a review of James' care package and nothing has changed. We're locked in a stalemate with the very people who are supposed to be helping us.
The time has come to get tough. I'm not going to throw the game, however much I'd like to, but I am going to get the big players involved. Local news. Local government. London mayor. Local MP. I will not be bullied. I will fight tooth and nail for my son and myself. I only wish I was not dealing with a disinterested government and a hidden disability...

Nuclear fallout

Yet again, a long gap has been permeated by a number of disasters/events some of which were mildly inconvenient (crashing the car and driving a Micra rather than a seven seater...), some of which have had long lasting and damaging repercussions (our overnight respite carer requiring 3 months sick leave). I could list the trials and tribulations of the last six months but worry you'll get bored and leave! So I'll briefly outline here we are at the moment, and hope youll see why it feels like Chernobyl...

We had a very difficult Christmas, not that it is ever easy with James, but for no clear reason this one broke us. Well, for us read my husband. He has been a dedicated, level headed father throughout the last 5 plus years when it comes to dealing with James. He can't be faulted (though I try!). He has previously maintained that James belongs with us at home and has never entertained the idea of him living elsewhere. So it was a huge change in tempo when over Christmas he conceded that the time had come to start to consider residential schools for James. Sometimes the battle to get a child a residential placement is around finding somewhere that can meet their needs. In our case it is likely that the battle will be around proving James would benefit from a residential setting, but we're collecting our ammunition and pulling rank. We have an educational review at the start of next term - let battle commence...

The strain that the Christmas period put on all of us led us to plan to request a review of our social care package. We feel that given james' level of need and the fact he needs continuous one to one support during waking hours, we need a substantial support package, in part to ensure James' safety and the safety of the rest of the family but also to allow us to recharge our batteries and have a few moments of "normal" family life. Unfortunately, our request has fallen on deaf ears and we are now in stale mate withsocial services who feel we exaggerate James' difficulties in order to manipulate them into providing more services. Nothing could be further from the truth but they are adamant. We are likely to have to go to mediation to sort that out...

So yes, we're in a nuclear bunker dealing with radioactive fallout at the moment. I'm hoping we'll survive, we have to, but I hope we'll all be intact...

Development

Edith has reached nine months and every day we tick off another milestone. We watch her like a hawk, looking for signs that she is developing "normally" or crucially, signs that refute autistic development. We often video or photograph moments which we think are key. So tonight she sat on the bed, giggling at Bea's Tiny Tears doll and I said "kiss baby". She grinned, leant forward, have TT a big slobbery kiss and, critically, turned to her daddy and smiled. That one subtle, natural, usually unnoticed step in development, a missing part of the autistic jigsaw, is so clearly in place. Joint attention. I've never met a baby who shares their experiences so readily. We know James developed this skill, though I'm not sure it was quite this early and certainly never at this intensity, and we have video footage of him reference pointing, cheerfully checking we had seen what he had. Joint attention is so critical in "normal" development yet it is rarely asked about at this young an age. The CHAT test, which has been validated above 18 months, screens for children at risk of developing autism and joint attention, or rather lack of it, is a major red flag. But at 9 months it's not mentioned in the various developmental checks. Simon Baron-Cohen believes you can tell in the first tear of life whether a child is autistic and I was once sceptical. Now I wonder....

All change

It's been a year of change, with the arrival of Edith, Bea starting school and finally employing a permanent after school carer for James. And as the long summer holiday draws to a close we face yet more changes. Change is hard for people on the autistic spectrum. Characteristically, they find it hard to deal with and disruption to their routine throws the whole world into chaos, making it hard for them to predict what's coming next. We've always felt that James isn't actually that affected by changes, he doesn't seem thrown when we get a reavemwnt cater to cover leave or if I serve supper later or earlier than usual. Overall he's quite passive and seems to cope with these sort of changes quite well, at least on the surface. I'm not so sure how well he's going to cope with the changes coming up at school though. He's been in the same classroom for 3 years mow and a couple of his classmates have remained the same throughout too. But this year he's changing classrooms, entering a class with completely different children and has new teachers and teaching assistants.... I hooe he (and they) copes....

Dipping my toe back in...

Hmmm. The water's still warm! Might have to come in more often....

It's been a long time since I last added to these pages and so much has happened. It would take too long to post a full update but the major change for all of us has been the arrival of baby Edith Agatha in January this year. Needless to say, life has been hectic since then but I feel I'm coming out of the fog now and beginning to feel vaguely in control once again.

A major cause for anxiety had been around James' response to another new sibling - the last time we brought a baby home he spiralled into a frightening and profound regression and "declared" his autism. So it was with trepidation that I crossed the threshold for the first time with Edith in my arms. I am very relieved to say he has taken her in his stride. Well, he covers his ears and gets distressed when she screams but quite frankly I often feel the same way! In many ways nothing has changed for him. We still provide him with one to one care and life revolves around him and his needs. It has been Bea who has made all the sacrifices and bourne the brunt of any hardship. Overnight she went from only child to middle child with none of the positives and all of the negatives. Luckily, if there's one thing that James has taught her it is resilience and she has coped very well with all the changes (although she breaks my heart when she turns to me and says "Daddy looks after James, you look after Edith, but who looks after me?....)

Escape..........

After a lot of deliberating, I decided to stick with my arrangement to come up to Edinburgh and visit my parents with Bea. My husband had arranged to take time off work to cover for James and I had organised resptite for the weekend so things seemed stable at home. My emotional state is still all over the place, as to be expected, but the thought of escaping and being able to not have to think about cooking, cleaning, sorting out school bags, collecting children from various activities was rather tempting. There is also the fact that I am guaranteed more sleep than at home as we get up very early to get James ready for school.

My anxiety levels were quite high for the trip up, in part because Bea had been unwell the day before and I wasn't even sure that we'd make it. In the end she was a dream on the train, apart from the incident when she threw up everywhere..... I nearly held myself together, and quick change of clothes seemed to sort it all out. I don't know why my children don't travel well - I have a LOT of stories about journeys that have been affected by ill children, but will save those for another time.

So I have escaped from a lot of the daily stress. What I can't escape from is my internal stress. I have always been a ruminator, and it has escalated back to levels that remind me of the time not long after James began to regress. That has made my grief harder to control, as I feel like I'm reliving all the grief I went through when I "lost" James. Because that's what James' autism feels like to me, a loss. I see the face of the boy I gave birth to, and love with all my heart, but I find myself wondering where the interactive, lively, loving, giving, entertaining little boy of two went? He just disappeared into a frightening, overwhelming world of autism. And I grieved then and I am grieving again now, this time for two children. And our future. And all my plans and hopes. I will find the strength to get through this and find another path, but right now I wish I could escape from my runaway brain.

What a difference a week makes...

This time last week I was parking my car.
This time last week I was happy and excited.
This time last week I was waiting to see my baby for the first time.
This time last week I told my daughter we were going to see her new baby brother or sister.
This time last week my future was bright, full of hope and promises.
This time last week I felt lucky.
This time last week I had never felt this sort of pain.
This time last week I didn't know....

This time this week I feel more alone than I ever have.
This time this week I can't imagine tomorrow, let alone my future.
This time this week I wish the outcome had been different.
This time this week I am broken, in agony and scared I'll never lift myself out of this gaping hole.
This time this week I feel so guilty for watching Bea watching me go through this.
This time this week I am holding my ill daughter, mourning for my dead baby and it just doesn't seem fair.
This time this week I am counting down the minutes to the moment when I saw the scan and knew what I was facing.
This time this week I feel the loss more acutely than this time last week.

It's over....

Today was the longest day of my life, and I can only hope that I never go through this again. I'm exhausted, emotionally and physically and feel as though all my stuffing has been knocked out. Perhaps the most difficult part was the number of small but significant difficult moments that came up through the day.

This post may contain some slightly difficult issues, so if you are feeling sensitive I'd suggest you read it when you're feeling stronger. I certainly don't want to upset anyone.

I arrived at the hospital at 830 this morning, starved from midnight as advised. I knew that it was very unlikely that I would be in theatre before 1230 as they had warned me that I would be on the emergency list. Being a Monday, I knew there would have been lots of other emergencies over the weekend, so I was sort of prepare for a wait, but I was needed at home for the evening, so I could help with James. We're having some difficult evenings at the moment (last night was a classic - having been sat on the toilet on and off for 5 minutes, he did a massive poo in the bath so we needed one of us to shower the children, the other to deal with the rather unpleasant bath....), so I couldn't leave David home alone with both children. Plus, I wouldn't have been able to get home from the hospital without him.

I had explained this last week, and begged them to make sure I was on the list as early in the day as possible. Sadly, this didn't happen. The night SHO had failed to put me on the list early enough and when the day team came and told me I was ver upset. I begged them to get me on the list earlier, explaining that I would have to self discharge if it got to 6pm. I find it really upsetting that I have lost my baby, have chosen to attend for an operation, yet cannot be added to an elective gynae operating list. If I was having a termination, it would have been a completely different story, with me being far more in control and more likely to get a slot that suited me. It's really not fair and I will be bringing this up when I write a carefully worded letter to PALS.

When the SHO was doing the consent form, I asked whether the products could be sent for genetic analysis. Explaining that we already had a severely disabled child, and that knowing that there was (or wasn't) a genetic explanation would help us gain some closure. Apparently it isn't protocol until you've had three miscarriages, due to NHS funding issues. I know James' problems don't have a specific genetic explanation (although there is strong evidence that there is a genetic component in autism), but if we knew that there was a chromosomal problem with this baby that might have a recurrence risk then we can start making decisions about whether we would continue trying to extend our family or not. The thought that I may never hold another baby in my arms fills me with sadness and sorrow, but I know we would never be able to handle another severely disabled child with James' needs. I couldn't provide the sort of home I would want to provide for any of my children if we brought another disabled child into the world. Of course, I am aware that there may be no answers from these tests. I am also very aware that tests will not rule out autism, and that we could proceed with a pregnancy and be facing rearing another autistic child. None of this is easy to deal with, and I guess I'm quite raw at the moment and will be guided by how I feel a few weeks down the line. We discussed many of these issues before trying for a baby, and whilst in the first weeks of this pregnancy, so I know we'll make the right decision for us.

Eventually, the registrar agreed to write the form, but asked me to take it to the genetics department myself and talk to someone there to try and persuade them to do the test "off protocol". I was aghast, and it was the hardest conversation I had all day but I must have found a symmpathetic laboratory assistant as she took my request form to the powers that be and they agreed without a fuss. But there was more to come - when it looked as though I would not be going down to theatre until very close to the cut off time to get the sample to the lab, they suggested I took the sample up there myself! Or alternatively get my husband to do it.... I'm sorry, but I found that totally inappropriate, I would have just about come round from the anaesthetic and was expected to toddle down the corridor to the genetics centre holding a jar that contained my dead baby. I lost it at that point and told them that the porters would just have to do the job they were paid to do.

Finall, at 230, they let me know that I was going down to theatre. I started getting dressed and then removed my jewellery etc. I asked where I could store them and was told just to leave them by the bed. I was shocked, especially when I was told that they had never had anything go missing. There was no way I was going to take that risk - I have had £4000 worth of jewellery go missing from hospital grounds so once bitten, twice shy. I demanded somewhere locked for my valuables and was told there was nowhere. I lost it, screaming and shouting at the poor healthcare assistant, refusing to go to theatre until somewhere was located. Eventually everything was easily sorted, but not until I had had to get beside myself with frustration. Yet another thing I'll be mentioning to PALS...

On my way to theatre, I became more and more emotionally distressed, experiencing the most profound, deepest, most intest, all consuming, visceral pain I have ever experienced. The theatre staff were so kind, compassionate, understanding and allowed me to wail, my cries were almost not human. The anaesthetic was administered quickly and easily and I woke in recovery feeling warm, safe and knowing it was over. I'm still in pain, both physically and emotionally, but knowing my baby is no longer inside me is somehow a relief. It's going to take a long time to heal from this profound experience, but it can only make me stronger.

Empty

I know all about the grief cycle - we studied it thoroughly enough during our psychology and psychiatry training at medical school and I have supported various families through their losses, both in the neontatal period and with older children. So here I am, in the midst of my own experience and all I feel is empty. Perhaps because at the moment I don't feel there's any closure, I almost feel distant from the whole experience. If I hadn't been for my scan on Wednesday I would still be pregnant (in my head, at least). I would be planning my future with my new baby, and thinking about all the logistics of adding to our family. Instead I'm in limbo, neither pregnant nor actually NOT pregnant. I'm hoping that my operation tomorrow will mean I can start facing my future again. Planning a very different future, but still a future.

I'm staying strong at the moment for the family. James has no idea what is going on and is going through a rather challenging time at the moment. His current favoured activity in the car is to undo his seatbelt and wind down the window, throwing himself out, Dukes of Hazzard style. I'm hoping a friend is going to be able to lend me her spare five point harness car seat suitable up to age 8, as it's getting quite dangerous now.... He's very hyper at the moment too, and perhaps that's because I don't really feel up to spending time with him. I feel so guilty about that and David is managing the brunt of his difficult behaviour but I need to look after myself at the moment.

The weekend has actually been easier than I expected. I had a stall at Duck Pond Market selling my crafty bits and bobs. I've been going there since April, and this was my most successful weekend. The scarves went down very well and my hand dyed yarn is proving very popular. I'm guessing I'll be back to dyeing over the Christmas break, to restock. I had avoided dyeing whilst pregnant as there is a risk of respiratory difficulties with inhaling the dye powders. So now I can do as I please! The other crafters at the market are amazing people - I have shared my difficult news with them and they've all been so supportive this weekend. I wouldn't have got through the weekend without them. I also indulged in some therapeutic spending, which was lovely.

Think of me tomorrow, my friends. I will be waiting and knitting a therapeutic project to keep my mind occupied. I'm sure there will be a lot of tears and heartache, but it will be the beginning of a new phase, the start of a clean slate, and some sort of closure.