Just how far have I come....

The last couple of days have really brought home to me how far I've come over the last two years. This time two years ago we were spending every weekend dragging ourselves round huge numbers of houses in our quest to find a home for the family. We had just received James' "formal" diagnosis and our flat had sold with a one day "open house" so the pressure was on to find a suitable property. I knew that moving was the right thing for us, we needed more space and the postage stamp sized garden was up a set of precarious stairs so James couldn't even go outside for two minutes on his own.

James has always been drawn to the great outdoors, so our house hunting priority was a house with a good sized garden. I think that we've done well - our garden is around 80 foot long and while it is northish facing, we still get plenty of sun (well, we used to get more but then the neighbours built an enormous extension that steals a lot of sun in summer boo hiss...). But just like the rest of the house, it was heavily neglected and run down and unsafe to leave the children in alone (when I say alone, I mean with me watching closely from the kitchen whilst cooking/cleaning/on the phone, not that I leave my children in the garden while I go out shopping!). We had a complete garden makeover from All Gardening last May, and it was the best thing in the house that we spent money on. The garden has gone from being an eyesore to being the talk of the road and we spent every dry moment of last summer out there (and quite a few wet ones too!). I'm looking forward to seeing the garden blossom over the next few months - spring is well and truly here (I saw snowdrops today as opposed to snow) and we're getting a feel for our garden through the seasons.

Anyway, I seem to have meandered from my point, which was how much things have changed for me in the last 2 years. I think the time around James' diagnosis was perhaps the bleakest in my life. I felt lost in a downwards spiral - I had a 6 month old baby who still needed me completely, and I had just found out my eldest child had a lifelong disability. I felt lost, lonely and scared. Add to that the certain knowledge that I would be leaving my (small but perfectly formed) support group of childminder and friends near our flat when I moved. I had one close friend who had moved nearby to where we were house hunting, but we were going to be travelling very different paths. I was now thrown into a maelstrom of appointments, interventions, training courses, literature on autism, forms to apply for statement of special educational needs, professionals meetings - not the idealised pathway that I had imagined myself travelling as a mother of two juggling life with two children and a fulfilling career. I began to question my abilities - as a mother, as a wife, as a carer, as a doctor, as a friend, as a paediatrician. How was I ever going to cope? What did my life hold for me? What was the point? I just wanted things to be the way I had expected they would be.

It is only now that I see how deeply I grieved for the loss of my son - of course, I hadn't "lost" him in the conventional sense, indeed he was very much alive, but I no longer had the child I thought I had when I held him in my arms through those long, cold December nights. It felt as if someone had stolen him from me and replaced him with a child I no longer recognised, one I had no connection to and one I couldn't understand. But I was wrong - I do and did understand him, probably better than most people, and our connection is very deep and meaningful to both of us. As time has passed I realise that he is still very much the infant I gave birth to, I just didn't know how he was going to grow up. The more time I spend with him and the more I think about his early years, the more easily I have accepted that autism was always a part of him (his poor feeding, his screaming episode the first time we went swimming, the way he didn't really "play" with my friends' children which I initially put down to him not seeing them often, the way he enjoyed the way I read "The Very Hungry Caterpillar" but if someone else read it he turned off because they weren't reading it the "right" way, the way that when I was heavily pregnant I let him spin CDs in their boxes just to get 5 minutes peace, the way his face lit up the first time he went on a roundabout). But the bleak times felt relentless - I cried rivers of tears, I cried anywhere and everywhere - in the park, on the train, at the medical appointments, with friends, with my husband, on my own, whilst watching TV, on the phone. I was terrified of how I would manage once we moved - where would I go with the two children? I couldn't take them to toddler groups on my own as James' behaviour was too difficult to manage without one to one supervision.

Two things changed all of this. My friends on Damsels pointed me towards Home Start a wonderful organisation that provides support and help to parents of young children in a variety of difficult situations. I was able to contact them before we moved and a volunteer was identified for me very soon after we moved. Just that chance of an hour a week with some help for me was liberating. I also contacted the local branch of the National Autistic Society and was very lucky to talk with the local support coordinator who put me in touch with a variety of agencies such as Kids Can Achieve.

So here I am, nearly two years on, finding myself the one who provides support, information and a listening ear to parents who have found themselves on the precipice around diagnosis. What a long road it has been, with a lot of uphill struggles, but I think I am somewhere near to having dealt with my grief and resolving the issues that diagnosis brought up for me.

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.

Boing, boing, boing

Have you guessed what arrived at our house this week? Yes, it's an enormous 8 foot trampoline which I bought from Outdoor Toys Direct. My brother gave the children some money for Christmas and we thought a trampoline will serve us well for years to come. I was very impressed with the prompt delivery and my father was able to errect the trampoline and enclosure in less than two hours (he did have some help, or rather, hinderance, from Bea!). We're going to be very popular with our friends now - I can see us holding lots of barbeques this summer.

When we moved to this house in May last year, we bought James a small trampoline from Toys r Us. At 3 and a half, James had finally gained enough control of his leg muscles to be able to jump and we knew he'd love having a toy that he was allowed to jump on (as opposed to being told off for jumping on the bed or sofa). I had no idea that less than a year later he'd have outgrown it and be ready for a garden hogging contraption! But we moved to a larger house with a family garden specifically to be able to enjoy it, and somehow I can see James spending most of his free time outside bouncing - perhaps we should change his nickname to "Tigger".

Seeing him yesterday bouncing for over 2 hours non stop reminded me of Nick Hornby's introduction to Charlotte Moore's "George and Sam" where he describes his autistic son, Danny, trampolining naked at midnight. If James ever learns that he can get out of his bedroom when he wakes at 1am, then I imagine we'll find him outside, jumping on his trampoline.

I remember when I first read that introduction - it was a damp, cold September day and I'd phoned my health visitor to ask her to come and see me as I was concerned about James' behaviour. From her response, I could tell she thought he was acting up and being demanding as I had a new baby to look after and I didn't correct her. As long as she was coming to see us, I would be able to talk about his difficulties. James had seemed to be developing completely normally - there was certainly no difference between him and his same age peers when they all had their second birthdays - and with my professional hat on I had no concerns at age 2 years 4 months. After a rather stormy May (I was admitted to hospital at 37 weeks pregnant and spent 10 days as an inpatient) Bea was born and we started to try and settle down to life as four. As we became more and more concerned about James' behaviour I was placated by the usual comments "oh, he's just regressing because of the baby" "he's doing that because that's what the baby is doing""oh, he's being a typcial, lazy boy" but literally overnight he had stopped talking with us (preferring to repeat chunks of books over and over again to himself - which turns out to be "delayed echolalia" and a form of self stimulating and self soothing behaviour). I spent most of the summer watching and piecing together his behaviour - I had seen so much of it in my clinic that by the time I phoned my health visitor I knew he was autistic. But somehow until I made that phone call I hadn't wanted to face it head on. I wasn't denying it (I discussed the possibility with paediatric colleagues in July), I just didn't want to face the harsh reality that the diagnosis brings with it. So after that phone call I headed to the library to pick up some books. Charlotte Moore's was one of a handful of books on the shelf and I picked it up, started reading the introduction and promptly burst into tears.

Since that cold, September morning I have shed a lot of tears in a lot of places, but seeing James bouncing away, hearing the joy in his laughter, knowing I have found something that he loves to do, makes my heartbreak a little easier to bear and I smile proudly at my boucy boy. Boing, boing, boing.