Saturday, 22 March 2008

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.

Tuesday, 18 March 2008

Thanking my lucky stars

There's no denying things are hard at the moment - with all the renovations James has found things very difficult and his behaviour is more and more challenging. He finds change difficult to deal with, but unlike most people with autism, it's the changes in his environment rather than changes in his routine that upset him most. He's starting to calm down again but he is still rather agitated and anxious.

As if I didn't have enough to deal with, I managed to get him booked in for a haircut last week. Haircuts can be very challenging for people with autism - there are so many sensory stimuli going on (hairdryers, combing hair, close touch, snipping sounds, the smell of the shampoo) that they can go into overdrive. The last time James had his hair cut was in December and it took two of us to hold him down. So I've been dreading taking him again. He seems to have developed a lot of sensitivities to things like toothbrushing, hairbrushing and nail clipping - I can't remember the last time he let me cut his toenails and I managed two finger nails over the course of the weekend. He isn't usually aggressive, but he screams, squirms, fights and pushes us as soon as he sees the clippers now. He used to be so compliant that I used to thank my lucky stars that he was so easy going. How wrong I was. But back to the haircut. We did lots of preparation and it seemed to pay off - he was a star for Ronan and I felt my heart swelling with pride as he sat there, quiet as a mouse, eating chocolate biscuits, hair falling in his lap, looking to all intents and purposes totally "normal" (I do hate political correctness at times....). I love his hair long and flowing, but hadn't actually realised how long I'd let it get - put it this way, I can actually see his eyes again and he's not hidden behind a mop of fringe. In fact, both of us have noticed an increase in his eye contact and communication since Friday, so we'll be making sure we have regular cuts from now on.

Most of James' "challenging" behaviours are a result of his sensory needs - he runs in straight lines and circles to stimulate his vestibular system, he chews his sleeves to calm him and stimulate him, he licks things because they excite his olfactory system. But some behaviours are a direct result of his autism - he has an obsession with doors and likes them to be closed, so he will spend a lot of time in the kitchen opening and shutting the cupboards - I often open a cupboard, turn away then turn back to get something out to find it shut again! You have to be fast in our house. A less harmless habit is his fascination with the hob - almost every time I turn it on, he tries to put his hand in the flame. Because he doesn't learn from experience I have to make sure he can't reach. I still have a vivid picture of the horror in my face the first time he touched the flame - we were at a friend's house and I stood there paralysed with horror. Until recently I could get away with only using the back burners, but he is so tall that he is soon going to be able to reach. I never thought I'd be continuing to babyproof my house now he's four. Another frustrating behaviour is his dislike of things hanging over things - he can't bear coats of jumpers over the back of chairs or over the bannister. At least it helps ensure I'm a bit tidier I suppose....

These behaviours, whilst frustrating, are the nearest to communication James gets (although he did say "tired" today whilst in the bath - he looked it too!). When he throws things off the chair, I guess he's trying to tell me he needs order and less clutter in his life. If only he understood the same goes for me - I feel like I spend all the time I could spend decluttering tidying up the mess he's made with the clutter! Every day, I thank my lucky stars that his behaviour isn't even more challenging - whilst I long for him to hug me and let me hug him, I don't think I could deal with him being physically aggressive on a regular basis.

On a totally different note, I am sitting here thanking my lucky stars that there are still some decent honest people around - I get so jaded with the world at times I find it difficult to believe. Bea and I squeezed in a quick coffee this morning (we have been spending a lot of time in DIY shops trying to choose paint colours - not an easy task for someone as indecisive as me, I can barely choose what clothes to wear let alone what colour may calm and relax me in my bedroom). As usual, she got her hands on my handbag and took some bits and bobs out - I thought I'd retrieved it all, but I ended up leaving my purse on the floor. I was giving myself a pat on the back for being early to pick James up from nursery when I realised it was missing - so not only did I end up being late, but I was flustered and tearful when I arrived. I was catastrophising as usual, and was imagining myself trekking to the shops and then the police station with both children in tow - not a mean feat, I can tell you. Luckily I only needed to vist the coffee shop and they had kept it safe for me. So my belief in humanity is reinstated and I will continue to thank my lucky stars.

Tuesday, 11 March 2008

On edge

That's me. Always on edge, worried about what James is going to do next and how I'm going to manage. But also, I'm on the edge of James - sometimes I feel so close to him, as if he's invited me to enter his world and really connect with him but so often I'm not allowed quite close enough. As if I am watching through glass, disconnected from reality and distant. Perhaps that's how he feels? The more I try and get through to him the more moments we share with laughter and connection but they're only fleeting and it breaks my heart more than I ever imagined possible. Sometimes I wonder if it would be easier if he was totally disengaged from me, because I wouldn't set myself up to fall down again. And when I fall, I fall hard. My spirit feels broken, my whole reason for being drains from me and I can hardly pick myself up. I have never dealt with rejection very well, and to experience it at this intensity and frequency takes its toll. When I watch James pushing me roughly aside, screaming "no!" forcefully, as I try and offer him a cup of water when he is coughing and crying at night, I just wish I knew what to do, how to handle it, how to stop myself crying and feeling like I am failing him. I wish that autism had never reared its head, and at the same time I find myself wishing that we hadn't seen so much "normality" in James. This time two years ago he was no different from his peers - we enjoyed reading books, singing nursery rhymes and making biscuits together. I was full of thoughts of his future and our future as a family. Fast forward two years and I'm still full of thoughts of his future and our future as a family but those thoughts are no longer full of anticipation, hope and aspirations. Instaed I am full of fear, uncertainty, worry, sadness and grief. For in many ways we have "lost" our son. I don't recognise him in videos or pictures - they are like the memories of long lost relatives, stored to help us remember. I watch them with tears running down my face, just as a mother would mourn her child. Only I still have James. He is still here, he still needs me more than anyone has ever needed me and I sit here, on the edge, wating for the next time he invites me to leave the edge and enter his world.

Friday, 7 March 2008

Reduce, reuse, recycle

We've had a pretty hectic week although I haven't really "done" anything... Next week is going to be a challenge as we are having two bedrooms replastered so have been spending all our free time trying to sort out the deritus that is taking over our bedroom. I admit it, I'm a hoarder, always have been and always will be. But I've decided to take a hold of myself and tackle it head on. So I've been clearing out my old toileteries, the childrens clothes, Christmas decorations etc etc etc. I have given a lot to charity, but will also sell some through ebay and I'm hoping to find a local NCT sale to sell some of the childrens clothes. Call me a sentimental old fool, but I find sorting through their clothes brings back all sorts of memories - I look at Bea's old clothes and find myself shocked at how small she used to be, and I look at some of James' old clothes and think of him wearing them "before we knew". So it's been a hard few days, as I'd find another tee shirt that reminded me of the happy go lucky days when our future looked rosy and bright - I know that it's not all doom and gloom for us, but it's a path I know is going to be full of bumps and dangers.

On the subject of clothes (sort of!) I was complaining about white tee shirts the other night. We have to buy quite a lot of clothes for James, first of all because he is always getting himself filthy or wet or both (he comes home from nursery in a different set of clothes EVERY day) and second of all because he chews the sleeves of his clothes and makes holes in them, to the point that he can't wear them any more. The chewing is a symptom of his sensory integration difficulties - he finds it calming, organising and reassuring. I, on the other hand, find it intensely frustrating as there are only so many tee shirts and jumpers in his wardrobe! There is a distinctive crispy feeling to the cuffs of his cardigans and jumpers as a result (the enzymes in saliva start to break the cotton down - nice!) and when the holes get too obvious I bin them. So nowadays it's bye bye Boden beauties and hello supermarket specials - these usually come in packs of 3 or 4 for £5 and my conscience is heavy at the thought of all the children being employed in sweatshops to keep James clothed. The most frustrating thing is that there's always one white/cream/pale yellow tee shirt in the pack. Now, perhaps it's just me, but there's no way I'm putting James in a white tee shirt. I've seen the state of his vests and they're not strictly exposed to the elements. So I have piles of unworn unloved white tees that end up in the charity shop bag, which alleviates my guilt a little bit. So when someone suggested dyeing them I felt like I'd hit the jackpot - it's been a long time since I did any tie dyeing but my hippy tendancies have resurfaced and I'm about to buy shares in Dylon. I do try and find "distinctive" clothes for James (although we have never actually lost him, if he is easy to spot in bright yellow or red gingham then it makes for a more relaxed trip wherever we're going) so dye is the way forward from now. James has a great selection of chocolate brown tee shirts now and Bea even got some tie dyed tights out of my experiment. For summer I'll be going for sunflower yellow I think!

I've also been thinking about what to do with all the clothes that I have to throw away - I usually take them to the fabric recycling bank, but then I came across a lovely pattern in one of my crochet books which used strips of rag. So one day I may make myself a rag rug from James' half chewed tee shirts - maybe a useful reminder of how he is now.

Monday, 3 March 2008

Baby steps

For me, one of the challenges of living with James is that nothing happens fast - at four most children are making massive developmental steps forward, preparing for the start of school (if they live in the UK at least - there's a whole debate about whether we should be delaying school starting age, fuelled by this latest research that shows that children from the Scandinavian countries, where they start school at around 7 or 8, actually do better than those educated in the UK). Their conversations take on real meaning and you can begin to rationalise with them (although they are often not rational beings - only just out of toddlerhood and still prone to meltdowns, tantrums and tears). They have a sense of self and are beginning to develop a sense of justice ("that's not fair" seems to be a popular phrase among James' peers at the moment!). In comparison, James is still like a toddler, having little awareness of anyone other than himself, no awareness of danger, barely communicating his needs, still wearing nappies, easily distractable and still needing fed. But he's a toddler in a four year old's body - he can reach the back ring of the hob, he can unlock the front door, he can unscrew the wine bottle, he can open all the cupboards that don't have child locks, he can climb on the table to reach things, he can scale bookcases - you get the picture! I have to be far more vigilant about him and what he's up to than I am about Bea. It's hard work, but someone's got to do it. So I celebrate every single baby step forward we take and today we had two. I'm opening a bottle of wine after I write this!

Like many autistic children, James has a range of foods he will eat and a range he won't touch. But this wasn't always the case - James was a dream to wean, eating anything and everything (except peas - he could spy one a mile off and spat them out in disgust). He has always loved fruit in all forms and ate vegetables with gusto. I was so proud that my approach to weaning him (rather slap happy and disorganised) had worked so well - there were only two things he refused to touch, ice cream and sweets!!! What mother wouldn't pat herself on the back? Imagine my horror when I discovered, about 5 months after we had started the ball rolling towards his diagnosis, that my easy going child had actually stealthily started refusing every single vegetable. He had systematically rejected them over a number of months and I'd hardly noticed as I'd been so preoccupied with getting him and us the help we needed. Luckily this "fussiness" never extended to the same extent to fruit, so I know he gets his five a day regardless. I have never really pandered to him - I still cook and serve him vegetables in all sorts of different forms, and nothing is ever off the list. I always put a few of whatever vegetables I've cooked for the rest of us on his plate, and accept that I'll probably throw them away, but you never know.... As if to prove me right, today I had cooked a pasta dish with chicken, peas and pancetta. James usually eats this by picking out all the pancetta (his favourite bit - I think the saltiness appeals to his tastebuds), then eating some pasta and then eating some chicken, with a bit of encouragement. Today he surprised me by reaching over into my bowl and picking out two half peas. They had popped out of their skins and he just popped them straight in his mouth, none of his usual inspecting, considering and touching them to his lips. So I popped another one out of its casing and passed it to him. Again, he ate it. So I did it again, and it was eaten without hesitation. Then I gave him one with its skin still on - this was the big test as the skin changes the texture and texture is very important for people with autism. Well, to my surprise, it was accepted as were another couple of dozen peas. It may be a handful of peas to you, but for me it feels like a breakthrough - he'll probably reject peas again in a month or two but for now at least I can get one vegetable down him!

I remember the day I brought Bea home from hospital. James had visited us, but had been more interested in turning the taps on and off (I had felt a degree of unease about this - almost every autistic child I had seen in my clinics had had a fascination with hospital taps, but all the midwifery staff said every new sibling was the same....). We had made a fuss of James as all the "experts" had suggested but he wasn't interested in us OR the baby. We didn't take too much notice and just let things be. But there was something rather peculiar in his reaction when Bea arrived home - he just didn't pay her ANY attention. He would turn away from her if we tried to get some interaction between them and when we put her in the bath with him he did a 180 degree turnaround. He cast her occasional sideways glances (using his peripheral vision - a phenomenon seen frequently in people with autism), usually accompanied by a look of disdain. If someone asked him who was in the buggy or what his sister was called he would reply with her name and we'd both smile, proudly, but that was the extent of his interest in her. He didn't even respond negatively to her presence - I think the first time he actually intentionally hurt her to get attention was when she was at least 6 months old. People used to placate me, saying that babies are boring for toddlers and he'd get more interested in her when she could sit up/play with him/began stealing his toys/started to walk but to this day he remains cold and unconnected. Almost daily it breaks my heart to see my doting 21 month old following her big brother like a shadow, desperate for his attention. The occasional interaction she gets with him is almost always instigated by an adult - I can ask him to kiss or hug her and he sometimes does as asked. For a while I've been trying to get the two of the them to hold hands - usually met with enthusiasm from Bea but never from James. Today we took a baby step - well, actually we took about 200 steps with the two of them hand in hand. I swelled with pride and tears welled in my eyes as we walked along the pavement, my two children hand in hand in front of me looking to all intents and purposes like two loving, sharing siblings. A moment of normality among a lot of difficult times.

Sunday, 2 March 2008

Stronger together

First of all, happy Mother's Day to all the mummies reading this. I am having a relaxing day, spending time with Bea and my friends from Slingmeet while James spends the day with his daddy. We seem to spend a lot of the weekend doing this seperate parenting thing - not what I expected when I got my first positive pregnancy test on Mother's Day five years ago, but sometimes things happen that you didn't plan for and didn't expect and certainly never wanted.

I spent yesterday in town at a conference run by the South East Regional branch of the National Autistic Society. I came home exhausted but exhilerated. I have attended a LOT of conferences in my time, and I can honestly say that this is the first time that I have literally hung on every word the speakers said. All the issues raised were so pertinent and it was an opportunity to learn about what is going on out there and also to network and meet other parents. One theme that ran through the conference was that in tackling autism, education, respite, support, research, funding and a myriad of other issues that we face, we are stronger together. The NAS is the voice of families and people with ASDs. If they are to be able to have any political kudos then they have to listen to the members' voices and present our needs to the people who hold the purse strings, the budget planners in the Local Authorities and the policy makers in Westminster.

I learnt a lot about the current campaigns the NAS is championing and urge you to click on the following link and help not only me and my family, but the thousands of other families affected by autism. The "I exist" campaign focusses on the plight of adults with autsitic spectrum disorders. A forgotten and neglected tribe, they have significant care needs which are rarely met. I cried when I first read the statistic that 92% of parents with an autisitc son or daughter worry about the future for their child once they are dead - I often worry about how James will cope without us, and the affect this will have on Bea if she is his only relative and has to care for him. How many other mothers of four year olds can say they have these thoughts on a daily basis?

Another presentation discussed the recently formed Autism Education Trust, which will focus on providing support within education for children with autsim. This will be across all educational settings and will include Early Years provision. This is an issue very close to my heart at the moment as I am struggling to find James an appropriate school placement for September. In all honesty, I need to find him an appropriate placement right now as he is struggling at nursery, mainly due to the environment. I am hitting a brick wall when it comes to moving him as there are no specialist placements available, even though his nursery have admitted that they are unable to meet his needs. This week I will be writing some stern letters to the LEA and my MP to speed up the process - I have been waiting over 3 months for a finalised statement following our review in November. If this conference has shown me one thing, it is that unless I start to make this a political issue rather than a personal one, nobody will listen. I will not take no for an answer and I will get James in a school that is right for him.

Hopefully my quest to educate James won't be as difficult as Anna Kennedy's - she had so much difficulty finding appropriate settings for their two sons that she ended up setting up a school herself. Hillingdon Manor School is actually one of the schools we are considering, and James may end up there if they have any places in the next academic year, so it was inspiring to hear her talk of the effort involved in this endeavour. Her book, Not Stupid is all about her experience and I have added it to my Amazon order.

So this weekend has reminded me of my voice - both as an advocate on an individual level for my son, but also as part of the NAS, a national voice for those of us that live with autistic spectrum disorders. We are always stronger together.