Sunday, 28 September 2008

Precious moments

Sometimes life stands still for a few seconds and I capture a "precious moment". I seem to have had several this week and they have taken me unawares, hitting an emotional core I didn't realise I had, making me well up and take a deep breath, making me deeply grateful for all that I have.

When we first decided to have another baby, still blissfully unaware of all James' difficulties and the path that we were going to follow, we imagined providing him with a sibling, a lifelong companion, a playmate, someone to share his childhood with. In the months that followed his regression and diagnosis, I found myself in some very dark places, wondering whether we had done the right thing in having another child. His autism became apparent around the time of Bea's birth and while I don't blame her (or us) for that, I wonder if we'd be treading this same path if she hadn't been born then. On the other hand, we never had to struggle with that difficult decision to have another child KNOWING he was autistic. I didn't spend my whole pregnancy concerned that I would have another autistic child. I enjoyed my second pregnancy more than my first, and felt much less unwell and exhausted. But once James' problems became apparent, my downward spiral started - I watched Bea constantly, trying to see if there were any early indicators that she too might be autistic. She slept well and soundly, and was a quiet, content baby - I worried. She was happy to watch what was going on around her, but was not particularly vocal - I worried. She loved rough and tumble play, spinning round, going upside down - I worried. She often failed to respond when I called her name - I worried. I think I have only just stopped worrying now - I see her running around with her doll, having tea parties, making "stories" up, using her imagination, looking directly at me when she talks, using long sentences with personal pronouns and I think "gosh, I think we're almost out of the woods". Then she starts on a jigsaw - not a 6 piece or inset jigsaw for her, no she's tackling 24 piece jigsaws and managing with little effort. And the niggle of doubt comes back.

Regardless of any autistic features she may or may not show, she has recently become a hugely important figure in James' life. When she was relatively "new" we tried to bath the children together - James would automatically turn his back on her, attempting to ignore her presence altogether, only interacting on his own terms (well, what we did was sung "If you're happy and you know it kiss your sister" which he duly did!!!). I spent hours crying my eyes out, convinced she would never be able to forge a relationship with him as he would avoid her at all costs. But recently I have had many a "precious moment" as I see more and more sibling interaction - Bea will take has hand and walk by his side when we are out and about. He enjoys her presence on the trampoline and I have fought back tears when I have seen him holding out his hand to her and then smiling his beautiful smile as she takes is and they start a "game". I don't understand the rules of this game, I don't even know if there are any, but the squeals of laughter and the look of delight on both of their faces shows me that they are sharing a "precious moment" of their own. The other day Bea told me that "James couldn't talk" because "James is different" - I was speechless. I often tell her that James is autistic and can't talk, but I wasn't sure how much she understood. Clearly more than I thought.

Perhaps the week's highlight was yesterday evening. I was absent mindedly blowing into a bottle to create a muscial note, a throwback to my days as a flautist, and James picked up his lidded beaker and started blowing on the spout and making direct eye contact with me. I think this is the first time in over a year I can put my hand on my heart and say he actually "copied" me. A very precious moment.

Saturday, 20 September 2008

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....)


If I'm honest, I've never been good at timekeeping. I was fine when at school, held down my Saturday jobs and even did well in my first couple of years at university. I think the descent to current levels began when I embarked on my intercalated psychology degree. I went from having 5 full days, starting at 9am and finishing at 5pm to being a free spirit. Days were usually lax, perhaps one or two lectures and the occasional tutorial. I was busying myself reading and writing essays and projects and was self directed. Then gradually my standards slipped and I found myself sneaking in the back door for lectures, asking for extensions for essays and generally kicking back and relaxing. Nowadays, I sometimes find that rather than having "get up and go" I've got "get up and sit back down again"!!! Obviously I didn't do too badly, as timekeeping has never been an issue at work, but I do find that I get behind in projects as I over commit myself - for instance, at the moment I have about 5 projects on my knitting needles/crochet hooks and plans for at least 10 more!

Once you add an autistic child into the equation, you can forget about ever being on time. Usually by the time I've checked through the list of essentials we need for the day (nappies - check, water - check, Little Life rucksack - check, change of clothes - check, change of clothes for ME - check, snacks - check, money - check, wipes - check, RADAR key - check, fruit - check, sense of humour - check) James has got undressed, eaten the snacks, needs a nappy change and I'm close to despair! So getting anywhere on time with him in tow is pretty unusual. I do try my best, and have set my car's clock to run 5 minutes fast (though I probably compensate for that in my head so it's not that helpful overall). Despite my efforts, I usually fail, but occasionally I surprise everyone, including myself. Today we surpassed ourselves - we managed to arrive at a birthday party 24 hours EARLY!!! Do you think we'll make it on time tomorrow?

Thursday, 18 September 2008

What a day....

Whirlwind. Hectic. Frantic. Frenetic. Squealing, Shrieking. Fast. Tiring. Busy. Full on. Tiresome. Embarrassing. Awkward. Heartbreaking. Uplifting. Exhausting. Physical. Relaxing. Warm. Mystifying. Hysterical. Lovely. Fun.

These are the words I'd use to describe today. But when I sit and think hard about it, they describe autism. Well, they certainly describe MY experience of autism, and a full day with James usually involves most of those feelings/experiences/emotions.

This morning we managed to get ourselves out the door by just after 830 - we're getting closer and closer to the planned departure time of 8am for when I finally go back to work! I dropped my husband at the station (feeling very much the Metroland wife!) and then dropped Bea with the childminders. On to James' new school where we had a session in the hydro pool for all the children in the new class. James has always loved swimming - well, apart from the first time I took him age 4 months where he screamed so loudly and so much that he managed to give himself a petechial rash which is usually seen in meningococcal disease. That was a pretty fitful night of sleep for me! We have been going regularly ever since, and he has really shown an interest in the water. We have our best communication when we are swimming - he'll ask for my hands, or ask to swim on my back and I feel really close to him. The past year has seen an end to our shared swimming sessions as he has started "proper" swimming classes where I sit on the side and he goes in with his teacher. It was nice to get back in the water with him, and enojoy some special time with him again. The teachers were impressed with him and hopefully we'll be able to set up a regular swimming session within his new timetable at school. I have volunteered to go and help for that class.

After that, we went up to the weekly parent support group. James ate his way through ALL the crisps and biscuits provided which was a little bit embarrassing, but then the other parents have direct experience of children with special needs, so didn't blink an eyelid! I have been toying with the idea of setting up a support group for parents with young children with special needs, and we discussed this at todays meeting. It sounds as if I'll have lots of support and interest, so I am going to write a draft proposal over the weekend. I will probably approach Kids Can Achieve so that we can apply for joint funding. I really think I can make this idea a reality and am enthused about the concept, so am determined to make it work. Watch this space!!!

I was able to buy some second hand school uniform at the support group, which James was happy to try on. I think it hit me then - he is really going to go to school. He's grown up so much recently that I find it unbelieveable that in a few weeks he'll be off on the school bus on his own at 8am and not back until 430ish. If I'm honest, I'm worried that the days are going to be too quiet!!! But I'll be brought back to earth with a bang over half term - his childminders are taking a week of leave then....

After a quick stop at home, which left enough time for me to confirm my post as a group leader for the medical student tutorial groups, we rushed off to our annual allergy review at St Mary's. James usually loves going on the tube, but was petrified today. I literally had to pick him up and carry him on, he was rigid. Once we were sitting down, he was fine, and I got on with some knitting while he stared out the window, looking completely normal. I find that so frustrating at times - he has no outward signs that he is actually quite severely disabled. I guess if people listen to me for long enough, and watch him closely enough, they'll cotton on pretty quickly that there's "something" not quite right, but I am hugely aware that his autism is a hidden disability, with no outward signs to mark him as autistic per se.

Good news from the allergy perspective - he is ready to eat nuts!!! We have a formal nut challenge with peanuts in two weeks, but are to try and get him to eat other nuts from now on. Roll on Nutella sandwiches and cherry almond slices! Of course, as he hasn't eaten nuts for 5 years, he'll no doubt refuse them point blank.... He is still on an egg free diet - well, he's allowed egg as part of a dish eg egg fried rice or in cakes. Hopefully he'll grow out of his egg allergy in time, but persistence at age 5 means it will probably be in his early teens.

Now we know what the uniform is, we need to kit James out with appropriate clothing - I have never bought black or grey up until now, so had a quick look around Oxford Street for appropriate schoolwear. He had another frozen moment at the top of the escalators - he'd been fine coming up, but was not happy about coming down. Once again, I literally had to pick him up and shove him on. I've no idea what people around thought of me.

So I'm home now, exhausted, exhilerated, acheing, happy and content. I wonder what tomorrow will bring?

Monday, 8 September 2008

Breaking news!

It's been a difficult week here - James is at home every day as his school had been unable to recruit a new teacher for his classroom. I've gone from him being at playscheme 3 days a week or more, to him at home full time and was already feeling the burnout hitting me. To add to my woes, over the weekend I developed labyrinthitis/vestibular neuritis and have been confined to my bed - I can just about sit up to read things on the computer and was able to do a bit of knitting this afternoon, but I have mainly been sleeping. Luckily, my husband was able to work from home today and the children had their first settling in day with the childminder (in the hope that I'll be going to work soon - but that's a completely different thread).

Just after 5 o'clock I got a phone call from the Local Education Authority to inform me that the school have been able to recruit a teacher! Very last minute (there can't be that many teachers who are out of work in September!) but excellent news for everyone. There will be a three week induction period during which time the children won't be there, but at least he'll be at school before half term! I can't believe it - we were prepared for him to be off school until November or even all term so this is amazing.

I'm over the moon, although my emotions are a bit labile at the moment, and I'm suddenly thinking is my wee boy ready for big school already? How the last 5 years have flown by - to think that 5 years ago I was heavily pregnant, anticipating the arrival of our first born and planning my shopping! I had fallen hook, line and sinker for all the media pressure to have the best pram, the perfect cot, the cosiest floor rug and was buying into the "lifestyle" of being a parent. Had I known what I know now, I would have saved most of my pennies. If I were to do it all again, from scratch, I would buy about 3 things - a good quality sling, an Amby hammock and a supply of Tots Bots nappies and Weenotions wraps. Oh and a supply of yarn from Cafe Knit so I could knit up lots of lovely hand knitted garments. As we often say in medicine, the retrospectoscope is a wonderful invention....

Here I am five years on, two children under my belt and James is about to start school. OK, not the school we would have expected him to go to (my husband bought a copy of "The Good School's Guide" almost as soon as he was born) but then how many of us truly walk the path we'd planned throughout our lives? The most important thing is that it is right school for him, where he can make progress and thrive. I can only hope that this happens for him and for us.

Saturday, 6 September 2008

The kindness of strangers...

I am just overwhelmed, amazed and speechless. That a group of strangers care enough about me and my family and our current difficulties that they have clubbed together and paid for some respite for us for James. But then I shouldn't be shocked, really, as that is the whole ethos of an internet forum - it's there to support people in all sorts of ways. I often find myself giving medical advice on threads about children's health issues (although I always cover myself by saying that I can't diagnose without seeing the child) and I am now considered an expert in baby led weaning and sling wearing, so I hope I have helped people with problems in the past. Now it's my turn to receive some greatly appreciated help and I am stunned. I am also angry as if the social services department was doing their job properly and handling their account appropriately, there would be plenty of funding for us to access respite through them, rather than having to depend on the kindness of strangers. It seems unfair that the government spout political nonsense about "Every Disabled Child Matters" and that families of children with disabilities are entitled to short breaks, yet the funding isn't avaialble to give this desperately needed respite. Or perhaps the money is there, it just isn't used properly. How the people who make their decisions, and suggest that our case isn't strong enough, can look at themselves in the mirror, I don't know...

Talking of kind deeds, on Ravelry, there's a forum called "Random Acts of Kindness" which is a wonderful set up where you make/give someone an item just because. You can make a wish list (I really struggled with that as I'm not particularly good at asking for things!) and then people either surprise you or contact you to offer something. This week I received a set of double pointed needles and have started knitting in the round - a skill I thought I'd never master, but which is deceptively easy! Another kind person sent my husband some gummy sweets - he's now stopped complaining about my knitting forums! I've sent out a couple of books and am making some scarves for people, so I feel I'm doing my bit. I am a strong believer in karma and it seems that the karma fairy is being good to me at the moment....