We had Daniel's First Occupational Therapy Appt. Today.

Today we had our first appointment with the new Occupational Therapist which we have been waiting for for at least six months. I was really pleased to see her. She is a very nice lady, and she worked really well with Daniel, and she was very much into partnership working with myself, asking what I feel needs work on most and listening to my concerns and she acknowledge that I am Daniel's mum and I know him best. Which is a first as many professionals seem to think they know best, and dictate how I should be a parent. So this refreshing approach was most welcome. Daniel was perfectly happy and he wandered around the gym the OT works in, investigating the little kitchen, and playing with the puzzles and putting his favourite bear on the slide. He didn't feel stressed or under pressure. And the best bit was that when little Matthew crawled up to be a part of it, instead of being seen as a nuisance and brushed aside (which has happened with another therapist) our new OT instantly without thinking about it just put her arm round Matthew and included him and stroked his hair and let him join the games. It was lovely to see. We weren't made to feel guilty for bringing Matthew along as well. And whilst I tried to keep Matthew occupied as much as poss so he didn't interrupt Daniel's important therapy time, the OT had the opportunity to work with Daniel and see how he responds to various stimuli etc. I came away with a block of four weeks' sessions booked over the next month with Daniel, and some of them will be when my husband is home so I will be able to go with just Daniel, which will be good for him. So I left feeling optimistic about the way that therapy is going. Which has been a long time coming. We are going to work on his vestibular senses and on his tactile defensiveness with a view to eventually possibly being able to facilitate Daniel being able to eat food again. The OT had obviously read Daniel's extensive notes from all disciplines as she knew all about his possible referral to Great Ormond Street Hospital London Feeding Clinic for his eating issues, and other things which she wouldn't have known otherwise. So I was very impressed and reassured that she had researched Daniel's case properly and is going to give the best care she can. So I am very happy.

This afternoon was a little depressing though. We walked as a family up the road to vote for the General Election. We pushed one child each in their respective pushchairs. As soon as we got to the bottom of our road, and turned on to the much busier road our estate runs off, Daniel was terrified. He was absolutely terrified of all the cars coming towards him, large and noisy. He was screaming and crying and shouting 'No!!' and putting his hand over his face. It was so distressing. He had the look of terror about him that I have come to know and dread. We felt absolutely awful. But the walk was only just over five minutes each way, and there would be nowhere up there to park. The only other way I guess we could have done it would have been to walk up one at a time whilst the other stayed at home with the children. But once we had set out, we felt we had best carry on. I felt awful for Daniel. He was in such a state. On the way back down the hill from voting, walking back towards our house, Daniel had got himself so worked up I have not seen him so terrified in a long time. I was in tears as we walked back home. I felt I had deliberately exposed him to something he hated and I should be there to protect him. It was awful. As soon as we got back I took him in and gave him some milk and a cuddle and he calmed instantly. Poor little man. I hope he doesn't have nightmares tonight. His total fear of cars and any loud noise is so severe now, and still we are refused a Blue Badge. All I want it for is so that I can park near the door at Sainsburys etc so Daniel is exposed to as little noise as possible. But they keep bloody refusing us. I saw Daniel's GP yesterday and she is going to write to the Blue Badge people to appeal. She is a lovely lady. The bastards will have to give it to us in September anyway, when he will be entitled to the mobility element of the DLA.

Anyway, he is fast asleep now with a full tummy of milk and he is happy. All the while he is in his own home with his familiar surroundings he is happy. I just want to spend my whole life, every minute of every day, wrapping him in cotton wool and not letting anyone upset him. I guess that's just natural!

Well, it's late again. So off to bed at last. Please do comment if you have any thoughts to add.


Sally www.limemag.co.uk and www.digbyandsprout.co.uk and www.ict4autism.org