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.

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.

When you least expect it....

I am often offered help and advice about autism and its causes and how I ought to manage James and what I should do to help myself and why it has happened to us and that there is this amazing new diet that cures autism and - well, you get the picture. I have learned to take it all with a pinch of salt, decide which pieces of information I want to filter in and then set off researching on my own. As soon as you have children it seems that it is an open invitation to people to start commenting on your parenting skills and giving you advice that you haven't even asked for. A recent post on a forum I frequent linked to these rather amusing baby t shirts, which I would love if the slogan could be altered to "please don't give my parents unsolicited advice - I'm autistic. Google it". Apparently the National Autistic Society used to sell a slogan t shirt that said "I'm not naughty, I'm autistic". I have toyed with the idea but whilst I have no problem labeling James as autistic I don't feel comfortable labelling his behaviour as "naughty". Even though his challenging behaviour is all a result of his autism very little of it is truly "naughty" and I'm not sure the slogan will help. Will people just think I'm making excuses for unacceptable behaviour and still proffer me advice and criticism?

It's very rare that I get any positive affirmation of my ability to deal with James and his difficulties. I do have a very close support group at my local branch of the National Autistic Society and occasionally turn up to our weekly coffee mornings to be told I've been "spotted" somewhere and how well we were all doing. Days like that make my week. Perhaps the most meaningful encounters are those times when an innocent bystander with no knowledge or understanding has made a positive comment about my children - often at the supermarket the assistants tell me how well behaved they are or how attractive they are.

Yesterday I was lucky to have a few hours to myself - James was at the special needs playscheme at Kids Can Achieve, a local charity that was founded by parents of children with special needs to provide the sort of support and assistance they needed. Bea was with Charlie. So I took myself off for some retail therapy and peace and quiet. I was standing looking at chopping boards when I heard a voice I recognised - you know the type of voice that is unforgetable and makes you sit up as soon as you hear it, well that's what I heard. It didn't take me long to place the voice and it was a colleague from my most recent workplace, before I had Beatrix. We had a long chat about life and James - she was not aware of his diagnosis as it only became apparent after I went on maternity leave. I discussed my concerns about going back to work and how it would be difficult to remain entirely detached when seeing parents and their children and breaking the news of diagnosis to them when I am still coming to terms with it myself. I even talked about my idea for a new role for myself, as a family advocate around the time of diagnosis and she thought it would be an excellent idea. I am now going to persue this as a realistic possibility. I doubt I would be able to get NHS funding for this sort of role, but I am sure there must be charitable organisations such as Contact a Family who may have a caseload I could take on. So watch this space....

After I had picked James up I took him for a drive (he loves the motion of the car) and just as I was about to head home he fell asleep. I took my opportunity and pulled over and turned the radio on - to my surprise I found myself listening to a Radio 4 interview with Dame Stephanie Shirley, an amazing woman who has dedicated her charitable work to funding research into autism and has founded a specialist school for children with autism, Prior's Court. My husband is keen for us to get involved in research, particularly if it points to the causes of autism, so I will be researching how to take that forward. Perhaps another new calling for me....