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 drugs don't work...

Strictly speaking, I should entitle this post "The hormones don't work...." but I'm not going to be too pedantic.

Why am I here, blogging at 7am? Once again, it's one of the joys of autism. Many people (both adults and children) with autism have sleep disturbance/difficulties. Countless exhausted mothers have dragged themselves to appointments with me, looked at me with eyes weighed down by chronic sleep deprivation and begged me to help their child sleep. Some wake up in the middle of the night, unable to fall back to sleep and proceed to ensure no one else in the household can get any more sleep. Some are unable to switch off and get to sleep, turning bedtime into an exhausting "game" involving parents putting them back to bed and the child boucing straight out again. As with many autistic behavioural patterns, bad habits become entrenched and it can be impossible to break the reliance on certain rituals (eg the light on, watching DVDs, jumping on the bed, or, for the parents, lots of caffeine!). James dares to be different - as with many of his autistic features, he is inconsistent. One night he will fall asleep at 8pm and we won't hear a peep out of him until 7am. We daren't sleep soundly, but enjoy the peace and quiet. The next night, he'll be up until after 10pm, much of it spent jumping around on his bed, pulling the covers off his bed and generally causing as much chaos as he can in hhis tiny box room. After a "late" night, he may sleep late with us having to wake him at 8am, but he often wakes in the small hours, screeching, jumping and making sure that if he's awake then so are we. Other nights he'll fall asleep at 8-9pm and we will lull ourselves into a false sense of security - tucked up in bed at 5am the grim reality of autism rears its ugly head once more. We lie there, hoping that a miracle will happen and he'll go back to sleep. The bed is warm and inviting and a sanctuary from the reality of what is happening in the next door bedroom. We dose fitfully, trying to ignore the call of the wild. But some things can't be ignored and we reluctantly rouse ourselves and start the day, exhausted.

In the late 70s, many children (not just those with autism) were given promethazine (phenergan), trimeprazine(vallergan) or another sedating antihistamine. The problem with these is that they are using a side effect (drowsiness) of the drug's main property and were never tested in children. Though in fairness, the majority of drugs I prescribe for children are not tested on children. Many families would complain of the "hangover" effect and children would become either dependent on the drugs or they'd need larger and larger doses as they became resistant to the drug. We'd switch around, the same would happen. So when melatonin was first introduced in the late 1990s, it was hailed as the solution to all ills. On paper it looks ideal - a naturally occurring hormone (now synthetically produced rather than from animal brains which carried the risk of viral transmission) that is an essential factor in the circadian rhythm and hence in sleep. Given 30 minutes before bedtime, it causes a natural drowsiness and aids falling asleep. There is evidence that people with ASD have lower levels of melatonin production than average, and that may explain some of the sleep disorders apparent in this population. At the moment, melatonin is only available on a "named patient" basis in this coutry. This means that it can be difficult to get hold of, many pharmacies don't stock it and if you get it from your consultant/hospital you have to make a trip up there to pick it up. In the US it is available at health food shops as the FDA classes it a "food supplement". So when a friend came over from the States recently, she brought some liquid melatonin for us to try.

Was this the miracle we'd been hoping for? A full night's sleep? Uninterrupted? No bouncing around? No bed clothes ripped to shreds in the morning? Getting a dose into James wasn't as hard as we'd imagined - mixed into yoghurt or a fruit smoothie it was completely disguised and he took a full 2mg dose. We bathed him and put him to bed. 15 minutes later we were in shock - he was fast asleep. It had WORKED!!!! We had a wonderful evening, chatting and watching TV (the first time in months we had sat down together to watch TV). We fell asleep earlier than usual ourselves, we were far more relaxed than usual. At 4am the world came crashing down. James woke up but not his usual quiet squeaking and giggling. This was full on, destructive jumping, ripping, screeching, yelling. Often if he's awake before 5am, he'll fall asleep within an hour. No such luck this time - we tried all our usual tricks. We brought him in our bed (he just pinched me and clambered all over daddy), we gave him water (he chucked it back at us, literally), we offered him some toast (he gave a vehement "NO!") and eventually we just left him to it. He didn't stop until we took him down for breakfast nearly 4 hours later. Needless to say, we didn't get back to sleep and decided to avoid the melatonin for a while! There are some slow release preparations available, and I will try to get hold of some of that, but meanwhile we're trying to find the optimum dose for James. We thought we'd finally hit the jackpot a couple of nights ago, but with a 5am start today I think we're going to have to reconsider! Wish me luck (and a good night's sleep tonight....)

Every cloud.....

They say truth is stranger than fiction and I know I couldn't have made up today's events. I think it's a fact of life that most children will sustain an injury that requires a trip to A&E at some point in life, but I always expected that it would be James I'd take first. He has no awareness of danger (his latest trick is to run away from us down the street when we take him out of the car in our drive) and is quite hypotonic (floppy) and so tends to trip and fall a lot. He has a high pain threshold and won't tell us when he's in pain (I can remember an incident when he was less than two when I found his toenail bleeding and hanging off when we were in a park and thinking how brave he was - this was before his formal diagnosis, and is just one of many little incidents that show me there were very subtle clues there before he "declared" his autism). But it seems that despite being the second born, Bea has found yet another "first" to outperform her older sibling - yes, she is the first of my offspring to sustain a broken bone. In fact, she's beaten me - I think my first fracture was when I was about 3, but I hope she doesn't follow in my tracks and continue to break another 10 plus bones. My last fracture was only about 6 months ago - I wish I could say I'd been running to save James from drowning or some such other heroics, but to my shame I was late on the nursery run and tripped over my own foot! Bea's story isn't particularly glamorous either - slipped on the kitchen floor, put her arms out to save her fall and broke her clavicle (collar bone). Considering it's been nearly two years since I last saw a patient, I was quite impressed with myself for identifying the cause of her screaming - even Mini Eggs wouldn't console her. My local A&E were very efficient (I did mention my training which helped bypass at least one doctor, I think) so we were out within 2 hours, having seen the orthopaedic consultant (I think I must be ageing rapidly - he looked far younger than me and I'm a long way off my consultant post!). She is currently tucked up in bed, dosed up on painkillers and looking like a princess - I've put a double duvet under her to cushion her as she's been screaming in pain all day.

It's events like this that really bring home how hard life with James really is. I think I'm a realist and know how much I do but it's so easy to get so involved in living your insular life that you forget how much you're adapting to your situation. There is no way I could have taken James with me to the hospital as he would never have coped there but equally I'd have found it impossible to leave him with anyone. Just as well it was the weekend, although my husband's plans for a morning of DIY were scuppered. Then this afternoon it's dawned on me how hard it will be to take the two of them on the nursery run - it's incredibly painful for Bea to be picked up and put in her car seat, which we need to do four times a morning. I can't ask anyone else to take James to and from nursery either, so I have had to ask my mum to come and visit to help out. Ironically, I have been exploring the possibility of getting the LEA to provide transport one day a week for James so I could go back to work - they've refused on the grounds we live too near (there's one direct bus that goes twice an hour and the times mean that Bea and the nanny would spend more time waiting for the bus/on the bus than at home). This is a rather dramatic way of getting transport though!

James was very "high" today - I am sure he could sense we were upset about Bea and the screaming didn't really help. Plus, he loves being outside and finds being stuck indoors on days like today really frustrating. When he's high he's really hard to engage with, running back and forth continually, spinning round and round, flapping and stimming and he finds it impossible to concentrate on anything. We tried most of our usual "tricks" but he wasn't having any of it. I was very glad when supper time came around as it meant bedtime (and with it a bit of peace) was round the corner. As Bea can't lift her arm, I gave her her glass of water with a straw and did the same for James. For the first time ever, he used the straw to blow through, something we worked on and gave up on last summer. So I brought out a bowl of water and washing up liquid and we spent a magical ten minutes blowing bubbles, splashing, popping, and the odd bit of drinking. So every cloud really does have a silver lining.

The man called U.N.C.L.E

I realised this morning that I hadn't even mentioned that my brother had come to stay this week. It has been over three years since he last stayed with us, although I have been back to stay with my parents many times since then. When he last visited us, I had an 18 month old happy, active, chatty toddler who doted on his uncle and showed no signs of autism. How much has changed in three short years....

James has always been quick to seek out contact with male carers - he used to run up to men in the park, pointing to himself, saying "James, me James, me Jamie!" and look straight into their eyes. Many of my tube journeys were spent hiding my face as James sought out eye contact with men who were trying to mind their own business! If it was a particularly good looking man, I'd flash him my best smile but more often than not it was some rather unkempt, old man with several bags full of goodness knows what. Often there would be delighted comments on how charming he was and how happy he seemed. Nowadays I still get comments on his looks but more often than not I can feel people looking and wondering why he doesn't talk to them, why he's wearing a backpack with reins, why he's screeching and tsking to himself (these are his stims which help to calm him). If they start up a conversation I am usually quite open about his autism but it's not always appropriate to talk about it. Anyway, I digress. The point I was trying to make is that he has developed a strong relationship with all the male members of our family - my brother and both of his grandfathers. He is always pleased to see my mother but his face lights up when he sees my father. So you can imagine how excited he was to see my brother.

Having an extra pair of hands around in the daytime during half term was a godsend. I was able to relax a lot and Jason really bonded with both children. The last time he saw us was in August, and Bea was only just learning to walk and had a handful of words - he was most taken by the chatty, jumping bean she's become. As for James, he couldn't get enough of his favourite uncle and they had plenty of fun running round the garden, playing tickling games, doing jigsaws and basically just hanging out together. We took the children to Cassiobury Park to the lovely playground there and to ChaChaCha, a borough supported cafe in the grounds. I think Jason found ChaChaCha a bit overwhelming - for the first half hour he was the only male in the packed cafe, and the noise was a bit much for him. He has told me that the last few days have been exhausting and fun but have put him off having children himself - I hope that he rethinks this as he will make an excellent father (don't tell him I said that - it's an unwritten rule that we never compliment each other in our family).

Not only did he help me out during the day, but he and David have managed to paint the playroom! Yay! We just did a quick two coat job with the Dulux Endurance range (we have developed a bit of a thing for Farrow and Ball paint but I didn't think it would stand up to the (mal)treatment it would get in the playroom) and the room looks so different now. It is bright and light and actually quite pleasant to sit in. I know we'd never have got round to it without the help from Jason, so let's hear it for the best uncle I know.