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.

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.....

Coming out of hiding!

It's been a while hasn't it? The last 5 months have been quite a roller coaster but I think we're on a pretty even path now. No doubt there will be another major dip around the corner, but for now I'm going to enjoy what I have. Over my weeks of absence, I had moments where I thought I really was drowning, but the clouds have lifted and spring is in the air and with it the smell of hope, joy and life. Compared to this time last year my life is infinitely easier and as a family I think we are all happier.

I'm not usually one for list but I thought I'd just wrote down a few of the issues that contributed to my absence! They're in no particular order, just as I remember them.

Renal colic - at least this bout didn't require 3 days in patient management. I was mortified at having to call an ambulance but I couldn't have taken my husband and the two children (unfed!) to hospital at 730 in the morning. The ambulance crew were not impressed when they saw how we had to secure the door behind them - a dead lock, chain and 2 stair gates were seen to be putting them in potential danger as they wouldn't have been able to escape easily. I had to point out that if it were not for these measures, our son would be well known to the local police and possibly the ambulance crews....

Infected blisters (severe enough to develop into an abscess which required draining and a course of antibiotices) caused by ill fitting shoes - sorry Clarks but I won't be using your shoe fitting service again. Luckily there is a fantastic service run by Footling where a qualified fitter comes to your home and measures your child's feet. I will never take James to a shoe shop again!

Severe crush injury to Bea's fingertip - sustained on the day that my husband was rushed to hospital (see above). So having told him we couldn't possibly accompany him, we ended up having a jaunt to the A&E department anyway. Luckily it wasn't fractured, although it has taken a LONG time to heal. I expect a call from social services any day now as Bea has had so many A&E attendances over the last 6 months. It is both a reflection of the fact that she is a second child and that we are often preoccupied with keeping James out of danger that she attempts rather brave and foolhardy stunts.

Full time school starting - although, to be honest for the first term James didn't make it through a full week as he caught so many coughs, colds and infections that he was either sent home or kept home at least one day a week before Christmas. The school is amazing - James is so happy there and is making so much progress it makes my heart leap with pride. To think that we were beginning to think we would never hear him talk again when his regression was at its worst.

My return to work - it's not been without hiccups and difficulties, but I am starting to get used to being at work one day a week. More about work another time though.

Christmas - the most stressful, difficult and downright miserable time of year for us. I find the whole thing just gut wrenchingly awful, as if someone is taking my soul from me every day for weeks. There seems to be no end to the festivities and wishes of a happy and peaceful Christmas, and few people truly understand why I find it so difficult. Next year I'm planning to build a den and hibernate. I'll go in in November and come out mid January.

I think that those are the major things. But as I say, things are brighter and better now, and I feel we're coming out of the fog. I hope I'll be around a bit more now.

Branching out

Wow. How things are turning around and in a good way. I am quite stunned at the way this week has panned out.

First of all, I received all my goodies to embellish my items for "Made for you, by Shamu". I am now the proud owner of business cards, sticky labels and post it notes! Just waiting for my labels to arrive and I'll be off. I am in a very productive mode at the moment - Ravelry have been running an Olympic knit-a-long and I've signed up to create 11 projects before the end of the Olympic closing ceremony. My husband is now a crochet widow although he's not complaining too much as I am including items that I've left aside for ages and am determined to finish them. I'll load some photos and prices up on my website later so come and have a look! If things go well I may open an Etsy shop as I've been browsing a lot and am really excited by all the beautiful crafted items there.

Meanwhile, my husband has had three job offers in the last two weeks. This is the man who has been in the same job for over 8 years (this is quite unusual in his line of work, a fact that was celebrated at a lunch in his honour earlier this year!) so it's been quite an upheaval. He accepted one of the offers earlier this week, having considered the terms and pay rise (less holiday, more pay) and finally told his immediate boss yesterday. To our surprise, his current company have matched the offer so he gets all the perks of his current job and the pay rise we need so badly. Plus he doesn't have to write a letter of resignation!

Talking of jobs, I have my meeting with my consultant next week and am quite excited about the prospect of going back to work. I've just got my head around the thought of leaving the children while I swan off to work and childcare is almost sorted. Then a letter arrives on my doorstep asking whether I would be willing to meet some first year medical students and talk about James' condtion and the impact it has had on our lives. This will be their first exposure to "real life" patients and it is an important part of the curriculum so I was happy to agree. While I was on the phone I mentioned my professional interest and that I hold several medical education certificates, and asked whether I could work with the department in any other role. So as long as I can get my consultant to organise an honorary contract, it looks as though I've just got myself another job as a student tutor for the patient contact course! I am really excited about that and really pleased I took the bull by the horns and asked. Sometimes it pays to ask.

Growing up

This is going to be a memorable few months with changes aplenty afoot. As James gets closer to his fifth birthday, I am more aware than ever before of the years passing. He is growing so fast and the years just fly past - I still remember his third birthday, when we were stuck in a limbo between being concerned and having discussed autism and actually getting his final diagnosis. It is only because I have been through the process, I can truly understand what a difficult time that is for parents. I refused to celebrate his birthday - I felt we had so little to "celebrate" - his regression was hitting a peak (or so I thought - little did I realise it would continue for another 18 months albeit at a much slower rate) and I felt further and further removed from his life. I had my very being shattered - if I couldn't predict and pick up my own son's autism, then how could I do it in my professional life? How would I cope with being at work and doing on calls with an autistic child? How could I sit across the desk from a family, asking them questions about their children, knowing that their answers echoed my own? Some of these remain unanswered - I still regularly cry and admonish myself for not having recognised James' autism sooner. My husband asks me what good it would have done, what it would have changed, how it would have helped James or us, and I can't find a good enough answer. The truth is that no matter when he was diagnosed, his current level of understanding and achievement would be no different. But you can't help thinking....

So in the next few weeks we are hitting some pretty grown up milestones - James ought to start school (depending whether the LEA can identify a school for him....). Unlike nursery, where he was only accessing 2 hours a day (and I was only getting 2 hours time away from him) he will be going to school for a whole day at a time. I won't know what to do with myself! I have had a taster of the freedom this will bring as he's been at the playscheme at Kids Can Achieve two days a week over the holidays and I find myself amazed at how much Bea benefits from the time alone with me. I can actually do activities with her that she's missed out on, such as taking her swimming or going out for lunch. Impossible with James in tow or during his 2 hour nursery session. But I still wonder how we're all going to cope when James starts school - for a start, as he will be going on school transport, we'll have to have him ready for the bus before 8am! That's going to be quite a feat, I can tell you (sleep deprivation means that I am VERY sluggish in the mornings....). I have a sneaking suspicion that he will be shattered and end up falling asleep on the bus on the way home, which will be a disaster for us as he then won't go to bed until around 10pm. I'm going to have to do some preparatory work for that too. Packed lunch will be a joke - at Kids Can Achieve he rarely eats his lunch until we're in the car on the way home, so who knows what he'll do at school.....

Meanwhile, Bea is growing up too - she has started to show a distinct interest in toilet training and is running around in knickers most of the time. I find myself excited, pleased and sad all at the same time - she is certainly no longer a "baby" and I mourn that loss. Yet I know how frustrated I get about James' retention of infantile behaviour, so I can see I am contradicting myself! As it looks as though James will be out of school for the greater part of next term, I have taken the step of enrolling Bea in nursery - another huge step for both of us. She starts next week and will be a year and a half younger than James was when he first went to nursery! But I know it's for her benefit in the long run, as she needs role models and peers that don't have autism so she can learn acceptable behaviour from them as well as having the structure that the nursery will provide. It's going to be a busy weekend, sorting everything out....

New beginnings

There seem to be so many things happening around me at the moment that I hardly have time to sit back and appreciate them. The last year has been frantic and very challenging but I finally feel there is light at the end of the tunnel.

The new garden is proving to be a haven - James has always loved being outside and a large garden was one of our essential criteria when we moved. Sadly, the previous owners had neglected the garden so whilst we had the space we also had the bindweed, brambles and building material (6 skips worth!) to contend with. Bea learnt to walk on the old lawn, full of dandelions and horribly uneven. James spent most of last summer with his legs covered in scratches from the brambles and unruly roses. So now that it is a safe, relaxing environment I've finally discovered the joys of gardening. Our last flat had a raised level garden the size of a postage stamp and wasn't particularly fun to be in. I did have a short spell of green fingered dabblings the second summer after we moved in (we got married the first summer) and grew quite a lot of seedlings, but the following summer I was pregnant and haven't had a moment since! I am woefully ignorant when it comes to gardening so when our designer said he was leaving us a plot to use with the children I decided it was about time I learnt a bit more. In my usual manner, that has entailed a bit of shopping - although I don't think 2 books and 10 packets of seeds is that bad! I don't know if it's beginners luck or the fact that the soil was well prepared, but so far so good - I sown sweetcorn, peas, carrots, spring onions, radish and rocket in our bed and everything has germinated. The radish are attracting the slugs so I'm off to find some environmentally friendly (and child friendly!) methods to keep them at bay. Tonight we ate our first salad leaves from my troughs and I'll plant some more soon. My friend brought round some cucumber, courgettes, aubergine and chard yesterday but I'm not sure that they'll all survive outside (we don't have a greenhouse) but I'll give them a whirl too. Bea loves to help me and her sunflowers are doing well and she's getting the hang of dead heading - she's a little overenthusiastic at times though, and keeps offering me various leaves she's picked, telling me they're delicious.

With all this growth going on in the garden I've noticed that James is very happy to be outside on the trampoline or in the summer house with us. In fact, he's started requesting that I join him on the trampoline - I suppose it goes some way towards me getting a bit fitter! We've been using "Intensive Interaction" techniques with him for some time now, but recently he has been reacting more positively to it, as if he's suddenly clicked that we're joining him in his activities. He is showing a lot of affection and when my parents were here they commented on his greater level of intereaction and awareness. It has been a long time coming - it's over 2 years since we really noticed his regression and it seems that he is finally beginning to make a little bit of progress. I look to September, when he starts school, with a sense of trepidation and worry - I just hope he doesn't find the change too difficult and upsetting. He has struggled immensely over the last 9 months at nursery, mainly because it was the wrong environment for him, and I am hoping that the smaller class (there will be 5 other children with ASD in his class) and higher level of support will mean he can start building on these foundations.

Another big change in our life is that I am earnestly looking at going back to work - I've been away for over two years now and feel that if I don't give it a go now I'll never get another chance. In medicine there comes a point where you've got so out of touch that you have to virtually retrain and I don't want that to happen. So I've taken the bull by the horns and am planning to start one day a week in the middle of July. So a lot of our time has been spent trying to find suitable childcare for the children - special needs nannies and childminders are few and far between, but there are some out there. It's been quite daunting, inviting people into our house, interviewing them and having to talk about James' difficulties with virtual strangers, but it's one more step towards me getting this part of my life back on track.