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....

What animal would you be?

We've had a rather busy few weeks, with plastering, painting, cupboard building, skirting board and picture rail fitting and general chaos. It's taken its toll on all of us, and something had to give, so for me it was my internet addiction. Perhaps not such a bad thing, as it's meant I've spent more time with my husband and less time staring at the computer screen!

My big "news" is that I am now unemployed - I had been on long term sick leave and childcare problems (plus my fragile state of mind) have made it impossible for me to go back to work, at least in the short term. This means I now have the joyful task of filling in my application for Carers Allowance, which once again brings home to me how much I do for James.

It's the second week of the school holidays and I'm frazzled - I usually complain that the nursery session isn't enough time for me to get anything done/spend time with Bea/have a cup of tea, but it's now that it's not there that I really miss it. Luckily James has had a few sessions at the special needs playscheme, so we weren't in the house while the carpenter was around this week. Last week I had a couple of days to spend with Bea and whilst I loved every minute of our 4 hours together it drove home the reality of how hard I find spending time with both children together. Whenever I take James somewhere new I find I'm constantly on edge as I'm not familiar with the layout, particularly the danger zones. He has absolutely no sense of danger and is like a 14 month old trapped in the body of a 5 year old. He still runs in front of swings (and has been knocked down several times) and is drawn to water and the exit gates. I have a vivid memory of having to hold a rather bemused Bea like a rugby ball (she was around 5 months old at the time) while I dashed to the gates of a local park where some "helpful" man had let James wander through (he'd actually held the gate open for him and let him pass - I was livid). This was pre-diagnosis but it's no better now. Because James couldn't let anyone know he was lost or give his name or any other details I can't let him out of my sight. I did buy some IdentiKids wristbands for him ages ago but he didn't like them on his wrist and chewed through them (and with all the chewing the ink ran so even if they'd stayed on the number wasn't legible!!!). Maybe I'll try them on his ankle next time.... So the thought of taking both children out on my own brings me out in a cold sweat - now that Bea is more active and testing the boundaries I find it impossible to keep both of them safe and occupied. Even at home I can't seem to get it right - if I sit down to do a planned activity with him she wants to join in (and can usually do it more easily than he can - it's both heartbreaking and heartwarming at the same time to see your 4 and a half year old being shown how to roll out play dough by his 22 month old sister....). As soon as Bea comes near him he loses interest and runs away or throws everything off the table or refuses to participate. If I am sitting down to try and do something with Bea, then he'll usually suss out that I'm preoccupied and find something inappropriate to get up to like chewing through loaves of bread still in their packet or pouring water all over the kitchen floor. A friend asked me how I spend my afternoons and we decided that the best way to describe it would be "damage limitation". I wish I had an extra pair of hands so I could keep them both entertained and safe. Which is why I think I'd be an octopus - I'd have enough arms to look after everyone AND I could give myself a pat on the back at the same time!