Wednesday, 25 March 2009

Two for the price of one

Yes, you've guessed it, I have not one but two poxy children. Fun and games all round here. I guess we've been rather lucky that neither of them have been particularly unwell with it, no prodromal fever or coryza and not too many spots. But I feel like I'm stuck here, and am getting cabin fever. There have been a few bonuses - as James isn't being picked up at 740am we're getting a lie in (although Bea joined us at 6am this morning, putting a dampner on that plan!) and he's more tired than usual so is sleeping until 9ish. He's also less "busy" than usual and far more amenable to instruction and requests.

I read a very small newspiece in the British Medical Journal a few months ago. It related to a finding that children with autism appeared less autistic when they had a fever. I suppose that the background assumption might be that as they have areas of the brain that function in a different way to typically developing children, their brain's response to a temperture may be different too. I must dig out the reference and read it properly. When I first saw this, it made me think about James. He is certainly less autistic when he's ill, but he doesn't need to have a temperature. He is quieter, less frenetic and more predictable. He moves a bit more slowly and is easier to engage. He allows himself to be hugged and reciprocates more than when he's well. His language is a bit more clear at times, although he will sometimes mumble and not bother speaking at all if he's really unwell. But it makes me wonder whether in his case the fact that he is slowed down by being ill is what reduces his autistic features. This is pertinent at the moment, because we are going through an assessment for probable ADHD and the outcome is likely to be a trial of medication. I am in two minds - on the one hand if the medication allows his brain to slow down, he may be able to access more from the curriculum and hence make greater progress at school, on the other hand we're looking at giving him a drug which has some pretty impressive side effects. I think we'll probably agree to give him a trial period and then make an informed decision about long term treatment once we've seen how he reacts.

I guess just as we might as well have both children with chicken pox at the same time, we may as well have ASD and ADHD....

Monday, 23 March 2009

Happy Mother's Day!

A day late, but as you'll see there are reasons for that. Yesterday was Mother's Day, a day I find slightly bitter sweet. Some of that is no doubt to do with the way it's become yet another commercialised merchandise driven celebration - I'd rather a hand made card and an hour in bed than a bottle of perfume (or, as I was shocked to discover, some anti ageing cream, advertised as "the perfect gift for Mother's Day - call me ungrateful, but if my son or daughter gave me anti ageing cream for Mother's Day, I'd be quite offended). The other reason is that it's yet another reminder of what we don't have.

Six years ago, on Mother's Day, I found myself holding a white stick with two clear pink lines. We danced around the flat, shaking, crying (with happiness), amazed that we had achieved this incredible thing - we had made a baby. I was stunned, as I had previously been told I would probably find conceiving difficult and need medical support, but it had all happened naturally, within three months of trying. We held each other close and from that moment on, I began to see myself as a mother. I imagined future Mother's Days, with cards, hugs, kisses and joy. I wondered what my baby would be like, how s/he would be at one, two, five, ten. In all my imaginings I never considered that I would be mothering a severely disabled child. I was realistic - things were never going to be the same, it was no longer just me and my husband, we had another life to consider, another human being to nourish, teach, love and support. But not once did I consider that I might have to deal with continued frustration, constant worry, stress, anxiety and rejection from my own child. I guess you tend to look at child rearing with rather rose tinted spectacles during your first pregnancy.

This was the first Mother's Day, of six, that I was greeted with "Happy Mother's Day!" by my child. But not by James, by Beatrix. I don't know whether James will ever learn to use phrases like that, he's just about stringing a two word phrase together, mainly "Want x or y or z" relating to food! Perhaps with time he will. I was treated to a leisurely afternoon, relaxing in my summer house, knitting and reading the paper. Though I had taken James swimming and then on his weekly social exercise at the supermarket, so I felt like I deserved some time off. I watched as the children jumped on the trampoline and climbed their new climbing frame and I felt blessed. I think this is a reflection of me having accepted things more readily now, and seeing that we can't change James, and love him as he is. For me, and for my husband, we share the view that if someone could take away James' autism, we would do it without a moment's hesitation, but that's not going to happen, so acceptance eases the burden of grief and loss.

So I'm relaxed and bathing in the hazy glow of maternal love when my husband asks me to take a look at Bea's neck - she's got lots of red spots. My bubble bursts - the dreaded chicken pox. That's a full week of quarantine at home. And then in a couple of weeks James is going to get it too. Quickly do the maths, and realise it will be the school holidays. Joy. Oh well, onwards and upwards! Happy Mother's Day - I wasn't expecting that sort of present!!!

Monday, 16 March 2009


Today when I picked James up from the childminder, he was playing with her new colleague. He had met her before, but was clearly drawn to her, hugging her, giggling uncontrollably and grinning from ear to ear. Watching the two of them together was a very precious moment - a lot of people find it hard to engage with James, and difficult to get anything back from him, so to watch her naturally follow his lead and get so much back was incredibly uplifting. It was as if he had found a new friend.

Friendships and autism don't really mix - the children with high functioning autism and Aspergers often desperately want friends but are let down by their social skills and their inability to "read" other people. This can lead to a lot of stress and even depression during their adolescent years - imagine the loneliness and isolation, knowing you're different, but unable to conform and "fit in" at a time when being part of the crowd is so important. And then there's the children like James, who have no idea what a friendship is, so aren't even aware of what they're missing out on. James is so engaged in his own (autistic) world that he doesn't notice people coming and going, and is very isolated in his "play" (if you can call it that) so anyone who tries to be friendly is ignored. Like a lot of autistic children, he prefers the company of adults and older children - I guess because they're more likely to help him get his needs met. I do get upset from time to time, but then I console myself with the thought that he won't get hung up on all the intricacies and challenges that adolescent friendships bring. No falling out with friends, no trying hard to support them through difficult times, no feeling left out when they meet new people, no worries about fitting in. Perhaps these are more "female" views of friendship, but I'm sure boys go through a lot of this too. I have a feeling that Bea is going to give me a double dose of teenage angst though, so perhaps I should be thanking my lucky stars!

My friendships are a source of support, laughter, hugs, booze and hope. Over the last two years I have met so many inspiring, special people who have helped me in all sorts of ways. I don't know where I'd be now if it weren't for them. I really need my friends, and hope that to some extent they need me, even if it is only for more yarn related advice! It's funny, when I think back to the days surrounding the time of James' diagnosis when all I could see was closed doors and doom and gloom I can't help seeing a new perspective now. It's as if he's opened doors for me, brought these wonderful people into my life and made it all happen.

Here's to autism and friendships - maybe they don't go hand in hand directly, but in a roundabout way, through joint experience and understanding, they are strongly interlinked.

Tuesday, 10 March 2009

Laughter is the best medicine

I can tell that winter is well and truly behind us, you can't fail to have noticed the crocuses, the daffodils and the sunshine! I have even tried hanging my washing out to dry a couple of times - I love the smell of freshly dried laundry. With the dawning of spring, I feel my general state of mind lifting and lightening. I have a wave of positive thinking and feeling, with the impetus to finally drive change. I am able to take charge of all the areas of my life that need work, and actually do something about them. I honestly think I am made for hibernation - the idea of curling up somewhere warm and dark for a few months and waking up to find spring in the air holds a lot of appeal. I wouldn't miss a thing about winter - it has the two lowest points in the year for me, James' birthday and Christmas. The aimless trawling through shops and catalogues and online "bargains" in a futile attempt to find something that might interest him only deepens my depression. The sadness is palpable as we hand him a present that he doesn't even acknowledge. OK, the only thing I would miss about winter is mulled wine, but it doesn't have to be winter for that!

With my new drive and vigour comes a return of laughter into my life. I find so little to fuel my sense of humour through the winter period, but now I'm full of hope and laughter. The best source of laughter for me is usually my children - James has episodes of manic laughter which we often can't fathom, but they're so intense it's impossible NOT to join in. Bea is going through a very amusing phase and comes out with all sorts of funnies, telling my husband "you got boobies daddy" (I think she meant nipples - his physique is a LONG way away from developing man boobs!), pointing out people falling asleep in the coffee shop, telling me I can stop cleaning and go to the ball with Prince Charming (and of course, I did as she said, I'm never one to cry off a ball, and housework is a definite second to a hot date!). But topping the charts for laughter provision this week is my good friend's blog - Slightly South of Sanity. I beg you to read it. I challenge you to read it and not cry tears of laughter - I read passages out to my husband and we're both in stitches. She has such a way with words, and I know for a fact that none of this is made up! So if you're in need of a pick-me-up, don't turn to the gin, pour yourself a double dose of laughter!

Sunday, 8 March 2009

General ignorance

Sadly, this is not a reference to the (excellent) round in QI where Stephen Fry throws random questions out at his contestants (incidentally, his blog is here, and he has a whole dedicated website here, I had no idea you could spend so much time mulling over the lovely Mr Fry...If you don't see me for a while, you know where I am!). No, I'm afraid this post refers to the good old general public and their attitudes to disability in general, and James in particular.

Two incidents today had my blood boiling, and sadly these aren't isolated incidents. They chill me to my core, as I am seeing the world that we truly live in at its ugliest. The attitudes towards disability, the speed with which people pass judgement and make comments, the arrogance that is so blatantly displayed - this is the legacy that I am passing on to my son. This is what I have to hope he is able to overcome in order to fulfil his potential, achieve meaning in his future, and live a happy, safe life. It fills me with great sadness, as he has enough hurdles to jump and here society will add its own.

Parking spaces - a much discussed and moaned over topic in my parenting forums. The advent of "Parent and Toddler" spaces has brought with it an alarming picture of the true nature of public spirit. I don't think there is a single mother who hasn't either had to struggle with a buggy/car seat/unwieldy toddler in a "normal" car parking spot because there are no parent and toddler spaces left. The distress this causes is bad enough, but then salt is rubbed in the wound when you see the single man (or woman) jumping back in the badly parked car in the designated space. Not a toddler in sight. Not even an older child. If you dare to take them up on this, you are more often than not met with a barrage of expletives - I have been told that "I can park where I (insert expletive) like" and that "it's not my problem". I've also been told that I got my own parent and toddler space so "it's none of your business". Of course, the stores don't make it any easier for parents as the parking restrictions are rarely (in fact, I'd go as far as to say never) enforced. So they get away with it, again and again.

Disabled parking bays are another issue altogether. We are fortunate that Bea is still young so we will often use a parent bay when out and about. But James is getting older and I don't want to use the parent bays all the time. As we are in receipt of the highest mobility component of DLA, we are entitled to a blue badge. Our excuse for not having sorted this out is that we need photo booth style pictures of James, and we'd have to catch him first! I have never actually used a disabled bay, but am sure that once we have the badge it will be very useful. So I am mindful of the issues that badge holders have - if it frustrates parents to be unable to park in designated bays, imagine what it is like for blue badge users (here I am referring to the legitimate holders - it's quite frightening to hear the statistics for the black market value of blue badges and how many fraudulent badges are flying around out there). On a Sunday I take James swimming at the local pool. The car park is usually full, but there are about 5 disabled bays. I have occasionally been tempted to use them, but refrained as we don't have a badge at the moment. I ended up parking quite a way from the pool, which was inconvenient but no huge problem. However, on my way back to the car, I had a double take when I saw the following. A large 4 by 4 was parked over two disabled bays. In the front sat a man reading his Sunday paper and playing the radio. Not a blue badge in sight. I couldn't let it pass and made a comment about how if you are going to be selfish and park in a disabled bay at least to show some consideration and not park over TWO bays. I'm sorry to say that he didn't even acknowledge my comment, let alone move his car.

Not 10 minutes later, I was to experience further frustration at people's selfish, ignorant behaviour. I continue to take James out to a variety of social settings, to help him learn life skills. If I don't teach him these things, who will? Who is going to show him how to hold a basket, fill it with staple food and take it to the checkout? Who will teach him to empty the basket onto the conveyor belt and hand over the money to the checkout assistant? Unlike Bea, he doesn't naturally learn from observation, he needs every step taught to him, over and over again. Recently, he has started to hold a basket, which hasn't come naturally to him. He holds it awkwardly, allowing items to spill out if not reminded to hold it upright. He walks with a stumbling gait, trying to maintain his balance with the basket. One thing I noticed early on in James' development was that he would walk right over our feet without noticing they're in the way. He has continued to bang in to things, to walk into people, not looking where he's going and unaware of obstacles (he has even walked into lamp posts and letter boxes). In the supermarket today, teetering up the aisles, he must have looked quite strange, wearing his rucksack with reins and screeching to himself to help keep calm. I tend to be on my guard, making sure he doesn't bang in to other people and keep him out of the way of obstacles. Occasionally, I take my eye off him momentarily, whilst I pick something from the shelf or look around for where the sugar is hiding. As we walked along, James lolloping forward, me hawk eyed and careful, I was rather shocked to hear a comment, clearly aimed at us. "(precede with expletive), a "sorry" would be nice". If there's one thing I can't bear, it's people who make comments behind my back, quick to pass judgement and not taking the fuller picture into account. I couldn't hold back and let her know that James is severely disabled and was doing very well, and that she should be the one apologising. And followed up with a request that next time she makes her comments to my face rather than behind my behind my back. I doubt she'll change, usually the ignorant don't want to be educated.

Thursday, 5 March 2009

Hidden costs

There has been a recent ad campaign from a charitable organisation (to my shame, I can't remember which, but a reputable charity) which quotes the extra cost of raising a disabled child as £26000 per annum. Just to make that clear, I don't mean that raising a child with a disability costs £26000 a year total, but that it costs £26000 MORE per year to raise a child with a disability than a child without. James is 5, so my quick calculation tells me that it will cost me £338,000 MORE to raise James up to his 18th birthday than for parents of non disabled children. That's a rather large nest egg that we won't be able to leave him.... Ironic, really, as he will need the money more than most, as he probably won't be able to work or live independently.

So where does this money go? What are these extra costs? Well, some of them are hidden, results of the impact of a disability on the whole family. As I write yet another cheque for more school jumpers (he's chewed through around 6 so far and that's only in one term....) I tot that up - 18 school jumpers a year at £10 a go = £180, most parents I know buy 4 or 5 for the whole year, so he's just cost me an extra £130 or so. Add in the polo shirts I had to buy at M&S yesterday and you probably have another £40 excess cost. He's chewed through a second coat this month, I don't think many people buy three coats a year for their reception age child. He usually comes home from school with a full change of clothes on, so there's twice the amount of washing to do, and that's without the extra sheets and pyjamams that often need changed overnight. Luckily, nappies are now provided free, but wipes are provided by us. I wonder how many people have bought 6 copies of the Mr Benn DVD? James has a "thing" about spinning the discs in their cases and then biting them so they're no longer usable. At first glance, we have a sizeable DVD collection, but many of them are duplicates or triplicates, and a lot of them are unusable. We haven't actually got the time to sit down and go through them, workign out which to throw out and which to keep! When we go on holiday, we have to rent a three bedroom property as James has to sleep on his own. So even though we're a family of 4 we are looking at properties aimed at families of 5 or 6 - that's another £200 or so excess. Then there's my work - I am back one day a week, but because I no longer work out of hours, my pay has been cut dramatically. In fact, my loss of earnings is probably over the £26000 mark, so every penny I've mentioned so far is in excess of this. Our childcare costs are higher than if James were not autistic, and our childcare choices are limited so we're stuck between a rock and a hard place. For James to access any extra curricular activity, he has to be accompanied by either myself or my husband. If Bea is coming too, we all have to go, which is obviously often the point of family trips, but sometimes I would like to be able to take the children on my own somewhere.... Many families buy in extra therapy to complement (or in some instances even supplement the lack of) resources provided to them through health. I used to take James to music therapy at Nordoff Robbins in Gospel Oak - a journey of about 12 miles taking 45 minutes on a good day, a fair amount of costs incurred in petrol and wear and tear on the car. The sessions were £20 and I also paid a babysitter to look after Bea, which was £30 for the afternoon. So for a 30 minute session, it cost me £50 plus petrol... Multiply that by 30 weeks and we're talking about £1500 per annum before petrol. This is just the tip of the iceberg.

Then there are the emotional costs to us as parents. Those are not financially quantifiable, but have an impact far beyond emotional wellbeing. The impact on our wider life can't go unmentioned. If James wasn't as disabled as he is, it is likely that my husband would have climbed the career ladder faster and we would be far more financialyl stable. We're not struggling, unlke many other famlies with disabled children, but things would be easier if we had a bit more security. That said, it is perhaps ironic that around the time that James was diagnosed he was toying with applying for posts in the financial sector and had he been successful, he could well have been at risk of unemploymnet now, so James may have brought hidden costs, but perhaps he has brought some hidden protection.

Wednesday, 4 March 2009

And it all comes tumbling down....

I knew things were going too well, that I was finally finding my feet and things were flowing smoothly. I finally got paid last month (after working for 3 months with no pay....) and James has been well throughout the term so far, so I am getting used to having more of the day to do things with Bea. We have regular respite coming in (funded until this month by our friends' donations, but now finally we've got our first payment through Direct Payments we can buy in more help) and we have a fantastic holiday coming up at The Thomas Centre. I'm actually starting to enjoy my job, and am really enjoying teaching the Imperial College medical students. James has settled well at school, the childminders and after school club, and Bea has settled at nursery well.

And then the bombshell............

At the moment, the children go to a childminder one day a week. There are actually two childminders working together, so there is always an extra pair of hands and extra support. This is essential when working with James if there are lots of other children around, as he does get a wee bit wild. So when we were chosing childcare this was really high on my list of priorities. Luckily the pair we found also had a lot of experience with children with disabilities. It felt like a huge weight off my shoulders when I rang and heard about their experience and set up. Unfortunately, they are not working together after Easter, and this is going to mean James can't be dropped off there - the bus drops him at 330 and there is another school pick up happening then. As he goes to and from school on council organised transport there is no other way of getting him to the childminder a bit later. So I'm back to the drawing board.

It's rather ironic, as I am on the steering group for Harrow's "Aiming High for Disabled Children" initiative. This is a government driven programme, facilitating the provision of short breaks for children with disabilities and their parents. It includes provision of things like after school clubs and chilcare facilities. So I'm sitting on the group, trying to take things forward and improve facilities for other families whilst my own childcare arrangements are in tatters. How ironic.....

Monday, 2 March 2009

Always expect the unexpected

James constantly amazes me, I find myself in awe of all he does and achieves in spite of his disability. He drives me to distraction too, but that's children for you!

Last week my parents came to visit. They haven't been here for nearly 3 months, which is a long time when you're only 5, and could well be long enough for James to forget them entirely. After all, he's not with them that frequently, so their bond is one that perhaps doesn't come naturally. In addition, both my parents find James difficult to deal with - they love him unconditionally, and try to engage with him, but there comes a point when you stop trying. They're not there, by any means, but the lack of reciprocity gets tiresome and you feel like you've explored all avenues. I often go through periods where I am less focussed in my efforts to engage with James, usually coinciding with periods where I feel overwhelmed, depressed and miserable. I actually need to be making all this effort, because every now and again he surprises me, and it's then that I can reap the rewards for my efforts.

My parents arrival was one of those moments - the minute the doorbell went, he ran there, helped me open the door and how I wish I had had a camera the moment he saw my parents through the glass door. His face lit up, he started grinning from ear to ear, and kept chanting "Nene, Dede, Nene, Dede, hello, hello, hello!". He was like a wind up doll, except he kept on going. He climbed all over my father, demanding hugs and smiling and stroking his face. He was very affectionate with my mother too, which made her day (historically, he has always been more free with affection towards my father, so this was very touching for my mum). He does make strong bonds, and other people really are important to him. So I am bolstered in my efforts and will keep doing all I need to do to support James and help him progress.

Another "unexpected" moment came when we were at Thames Valley Adventure Playground on Saturday. As we were getting ready to leave, I gave James his coat, slightly absent mindedly. I haven't ever seen him put a coat on without help, so you can imagine my surprise when he took it, looked at it carefully, worked out which arm to put in first, hooked it over his shoulders and popped his other arm in! Wow....

So always expect the unexpected, without that you will miss many an opportunity.