Long silence

It's been a long time since I found myself here and shared our experience of "Living, not drowning" with you. It's only now I realise that's because we were literally drowning.

Our battle was long and hard, and many would have fallen, but our inner strength and determination to access the essential level of help and support for our son was the driving force that kept us going.

In September this year, 20 months after raising the issue first with social services and then with Education, our son started a termly residential placement at an autism specific school.

Our lives have turned around, but most importantly HIS life has changed beyond all recognition. He is a different child, still very active and difficult to keep to task, but his level of motivation to be involved in class and lifeskills activities is so uplifting and makes every tear I shed and every ounce of anger and frustration I felt worthwhile. He looks so settled and happy and I feel like he feels he's at home at his new school. The staff can't get enough of him, and are always happy to chat to us and tell us what he's doing/eating/playing with/destroying! I get regular weekly reports from his class teacher and last week we went to his first review meeting. I was so proud of James - every report from every therapist, teacher, carer and support agency was full of positivity and he coped well when his routine was disturbed and he came to see us (the chocolate biscuits I'd stashed away in my bag might have had something to do with that!). When the case officer from the LEA was asked if she had anything to add, she said she had never been to such a positive annual review which delighted me at the time.

It is only now that I think back to that statement that I am appalled. The annual review process is meant to show that a child is achieving his or her potential and should be positive. It's an opportunity to review progress, set goals and discuss areas of need. It shouldn't be doom and gloom otherwise that suggests the placement isn't right for the child.

So I come back here, because I can't help thinking about all those other children who are being let down by the services who are meant to provide for them. I will expand on our experience of the last 20 months from request to placement over the next few weeks and hope that it will help others in a similar situation.

My silence is broken and I need to spread the word!

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....