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Firstly I would like to begin this post by saying, Gosh, where has the time gone over the last fortnight? I am so lax in my delivery of my next BLOG entry! I knew it had been a few days, but not this many! So I do apologise. But lots of exciting things have been happening. The most exciting things really are to do with some more wonderful developments in the world of Daniel. Firstly, it has to do with his chronic constipation. Bless him. I had to take him to the doctors as it was so bad. He has had constipation all of his little life. Nothing seems to work. And recently it has been so bad that he has been going once every 7 or 8 days! And he is in extreme pain when he goes and breaks out in a sweat and screams and it is awful. So enough was enough. The doctor just recommended Lactulose. So as I said in my last entry, I imported Tru Fiber, New Beginnings Probiotics, and ReleaseZyme enzymes from USA. He has been on them now for probably nearly three weeks. They are working sooo wellllll!!!! Daniel is like a new child. He runs around with so much energy around the house (still won’t walk outside though, of course) and he is happy and he is much more interactive with his little brother Matthew. He seems to want more nutrition, so he is drinking at least one more prescribed drink a day than he was at the start. So that is giving him energy too. We go to the Dietician again tomorrow where she weighs him on the same set of scales each time, so hopefully we will see quite accurately if there is any gain in weight. There wasn’t last time we visited, but I wonder if there may be a little gain this time. We will have to see. But the best news is that he is not constipated anymore!! I am so relieved and so happy for him that I could cry. It is a major thing. When you have a child who is so small and vulnerable, and must be in constant pain and discomfort and they can’t tell you, and they are frightened of going to the toilet because they know it is going to be agony, that is a horrible thing for a parent to think of their child. It is very distressing. And this week, Daniel passed the biggest motion I have ever seen, bless him, and he did it without any fuss, so that was amazing. And then about two hours later the same thing happened again. So I think he is now totally empty, and comfortable for the first time in I don’t know how long, and relieved. (Pardon the pun!!) I know it is not particularly a pleasant topic to discuss, but I am just so happy for him. Once this happened he had more to drink (eat) and has had loads more energy. I think that although these formulas are expensive to import, it is the best thing I have ever done for my child. I am over the moon. Long may it last. I will keep you informed. But I am have no reason to believe that it won’t. Thank goodness for the biomedical approach. I wish I had tried it a year ago!!

And the other wonderful news regarding Daniel is that he wore his sunglasses today!! All day!! I bought him a pair of Thomas the Tank Engine blue sunglasses last year and he went absolutely nuts if you went near him with them and would definitely not tolerate wearing them at all. I tried several different times, but always got the same result. No way!! So I gave up. Then today we went out for the day as the weather has been absolutely superb. I had a sun canopy on Daniel’s big MacLaren pushchair, so he didn’t really need a hat, but my husband suggested the sunglasses. I said he would probably be wasting his time. But he got them out the back of the car and put them on Daniel’s face. At first he put his hand up and complained a little, and I waited for him to launch them across the car park, but he never did! And then he sat back in his comfy chair and relaxed and started taking in his surroundings, looking like he was in the lap of luxury!! So we walked off around our location and went for our picnic etc and Daniel kept his glasses on. All day. He only took them off if he came indoors. I was absolutely amazed. That is such total progress. I am really happy for him. And he looked so cute too!! The thing is, I have been reading up on orthoscopics by Ian Jordan – he is authoring six articles over six issues of The LIME about this subject. It basically means that some children with Autistic Spectrum Disorders have this problem with vision and facial recognition and spatial awareness etc that can be relieved through the use of coloured prism lenses. I would dearly like to have Daniel tested for this, as if he has these vision problems and they can be corrected, he may be more confident on his feet and fall over less, and may lead to a higher quality of life all round for him. I am currently trying to find the nearest practitioner to us, as they are few and far between. The closest I have found so far is a seven hour round trip in the car, which is not fun with two little ones. But I shall persevere and let you know of any developments. But if Daniel will happily tolerate sunglasses outside when it is bright, there is hope that he may tolerate glasses, if indeed it is found that he needs them. So that is really reassuring news too.

And at nursery Daniel made them all cry last week. He ate a yoghurt for them!! As he is not eating ANY food at all and has not been for quite a while this is a real step forward for him. They were so pleased they took a photo and printed it for me to keep as proof!! They are so lovely at his nursery. Now every time I collect him they say he has had a yoghurt, so it looks like it may become a habit for him there. Bless him. He is still doing very well at nursery. He is picking up new words all the time. And they are teaching him his colours. And they managed to persuade him to go outside to play for a little while in the garden on Wednesday, which is a real big thing for Daniel, as he is so afraid of being outside and becomes so unsure on his feet and falls a lot. So he is slowly daring to do more things. I think he is slowly gaining more confidence as he becomes used to the routines of the nursery, and he knows what is going to happen next. He is very much a routine child. When I took him to nursery the other day, my husband was home, so I didn’t have to take Matthew as well. So we pulled up in the car, and I walked round to get Daniel out. Then he walked to Matthew’s door and stood to wait, even though he must know his brother was not sitting next to him in the car. So I said, no Daniel, Matthew is not with us he is at home with Daddy, so we can go straight in, and I pulled his hand to walk toward the nursery door, he didn’t understand why I was doing this differently and started crying his eyes out. He had tears streaming down his face and he was so distraught. It is so upsetting to see him like this. It sort of confirms he really is autistic, on days when you think – oh, isn’t he doing well, maybe he will be very mild and high functioning, – then bam! something happens to remind you, hey! he does have disabilities, he is not like other kids. But still, I love him so much, I wouldn’t change anything for the world. And it just makes all his little achievements that bit more exciting and worth celebrating!

Well, we have just uploaded the first issue of The LIME Magazine to be printed, to be posted out to subscribers at the end of the month. It is very exciting. A culmination of a lot of hard work. I can’t wait to see the hard copy in my hand! I went all the way up to Birmingham on Friday for the 5th Annual Conference on Autism by Paula Aquilla the co author of Building Bridges. It was centred around Sensory Integration Dysfunction and was absolutely excellent. I will be writing up the details of the conference and the interviews I carried out in the August Issue of The LIME Magazine. It was a very tiring day doing all that travelling and then attending the conference, and then doing the interviews afterwards, but I am already looking forward to attending their next conference in Bournemouth in November. It was a wonderful opportunity and I am so glad I was able to go.

I promise I will not leave it so long until my next instalments. I was just so busy getting the last minute bits done for The LIME then attending the conference, and I lost track of days!! But I will keep you informed of Daniel’s progress on a much more regular basis again from now on. I promise! I am sure he will have lots to tell us and show us all.

Many thanks for all your support, kind readers.

Sally

http://www.limemag.co.uk http://www.digbyandsprout.co.uk http://www.ict4autism.org