The TreeHouse London Party & Daniel’s Appt with Ian Jordan in Glasgow.

Well this has been one extremely busty week!! I feel as though my feet did not touch the ground! Daniel started the week off with a really good session with his Speech and Language Therapist on Monday. And Matthew joined in and repeated some of the words and was really good at taking things in turns so that both boys got some therapy!! It was lovely to watch them happily play together, particularly as the previous week Daniel had been totally turned off to the SALT and did not want to join in any therapy at all. She brought some flashscards with her that I thought Daniel may not know, and he suprised us both by knowing all of them! And then he picked up a pyramid shaped building block and very clearly said ‘triangle!’. It was fantastic. Neither of us knew Daniel knew that word, and he must have learned that at nursery. I think he learns a lot more now than he lets on, and he only comes out with it on his terms, when he feels like it, and not to order at all! I know he is picking up nursery rhymes at nursery, and he enjoys his music and singing. He is also obviously learning his shapes, his colours and all sorts. And he is getting very good at his counting now, going way over thirty. So that is all good.

And then Daniel had his Occupational Therapy appointment on Wednesday. That was just fantastic. This OT is soooo good. She really is excellent. She gets the right results and she obviously just clicks with Daniel. She has an assistant who is also good with both the boys – as I normally have Matthew as well. This week they had a trainee OT watching too. But Daniel took it all in his stride. He just marched straight into the room. Then he went right to the sand pit!!! I thought my goodness I have brought a different child in with me by mistake. This is not Daniel!! He went straight in and picked up the rake. Then he raked a little. Then he walked off with the rake. But he touched sand. Voluntarily!! It was truly awesome! None of us could believe it. Then he clambered quite easily over the bean bag. And then the OT started picking him up and swinging him. He was not too sure at first. But soon he started smiling. Then he said ‘more’. Then he said ‘more swing’!!! I just could not believe it. He has come on so far it is amazing. He was having fun. He was being thrown about with his feet off the floor and swung at steep angles and he was fine with it. Then he put some toys on the slide and watched them slide down. He is also always fascinated with the small mirrored area. That is quite cute to watch. What was real progress though was that he relinquished his teddy bear immediately, and he didn’t pick up another toy to hold as a substitute soother/distraction. This makes it much easier to have a really good intensive session with the OT with no impeding distractions. So he did really well. And again, toward the end of the session, he and Matthew did a really nice turn taking game of trackball for several minutes, which was lovely to see.

So then Thursday came and I was off to London for most of the day. I caught the train up to Victoria and then caught the Underground to my destination, which wasn’t actually too far. I was in London to attend the TreeHouse Charity for Education Campaign Launch for TalkAboutAutism run in conjunction with Talk Talk. There was a good turn-out. There were parents and families who have done some work with the charity, such as myself. I was there because I helped to promote the campaign by doing radio interviews for BBC and local radio stations. There were also representatives from other Autism charities and other related organisations. It was a wonderful opportunity for me to learn more about the work TreeHouse are doing, but also for me to have a long discussion with the newly appointed Director of Research and Communications to talk through the possibility of co-working with The LIME Magazine, and helping to reach as many families out there as possible. I also discussed my own charitable organisation’s work in ICT4Autism, and how we should soon be in the position to help the first group of families by providing adaptive computing technology and software for children with Autism. It was also a wonderful opportunity to meet and have a lovely chat with the lady from TreeHouse in London who took part in the BBC Radio interviews with me, and we struck a chord with each other and felt we were kindred spirits with much in common working to achieve the same goals, and it was lovely to put a face to the voice and chat further. All in all the Launch was a great opportunity for me, I really enjoyed it, and am really glad I made the effort and travelled the journey. I was a bit gutted that I missed the train home though, and had to wait another half an hour for the next one!! But hey, these things happen I guess!

And the last drama of the week was of course yesterday, travelling all the way to Glasgow in Scotland, to get Daniel’s eyes tested!! We had it all planned. We had to get up at 5am, to drive two hours to get to London Stanstead Airport. I had pre-booked the car park and paid for it. We got there in plenty of time, and sat and had a coffee. The boys were groggy and confused, but OK. We waited until last to board the airplane so as not to stress Daniel. We were told by RyanAir on the phone that Matthew could travel on Andy’s passport if we brought his Birth Certificate to prove his age (under two). So I got that out and we had all our documents ready. We went to the boarding gate, and the stroppy miserable cow on the desk told us we couldn’t fly. My stomach felt like a ball of ice and I totally panicked. I couldn’t understand it. We were told it was not a problem that Matthew does not have a passport. But the woman on the desk said he had to have a passport. She would not let us board and that was that. I told her we had a really important appointment and were only flying inland!! But she didn’t care. She refused to telephone her manager. She refused to let me use the phone to call management. She just closed the gate!! So we had to make a split second decision. The plane was about to leave. So I said I would go alone. Then we had to wait to see if the plane would wait. If it didn’t I would have totally lost my mind I think. But they said yes. So I was bundled off, not even getting the chance to say goodbye to my 16month old, and run down the gangway carrying Daniel who was scared and screaming. We got on the plane and it was practically taxiing off immediately after. So we landed in Glasgow on our own and somewhat shell shocked. I had no pushchair or anything so poor little Daniel had to walk everywhere. It took me a long time to find our destination, it was a small practice down a cobbled lane and a lot of locals hadn’t even heard of it!! But when we got there it was all worth it. Ian Jordan and his family are so friendly. They couldn’t do enough for us. They made me a cup of tea, and broke open the toy box for Daniel. He immediately fell in love with a car and was happily playing with that. Ian sat and explained how he would test Daniel, being as he is so young and not particularly verbal. He talked through everything. I said that I feel I also have some of the symptoms of Visual Dyspraxia so he said he would test me too. So we started with a basic eye exam for Daniel, then me, which we passed no problems. Then Ian tested Daniel. The basic concept is that we see in RGB. In children such as Daniel, two of the three colours dominate over the third, which shuts out some of the field of vision. So the idea is to augment the third colour, to restore the RGB balance, and establish a more comprehensive field of vision. The test showed that Daniel needs Red. So we chose some frames for him, and he is going to have red lenses. I can’t wait for him to have them. They make the glasses and then mail them to us – given the distance. Ian also tested me and found me to be deficient in Red also. It was amazing that he and his son knew exactly which frames would suit me! I tried on two frames, and the second frame was the one! There was no trying on frame after frame after frame trying to find one that would look ok. They just picked these gorgeous Fendi frames immediately!! And the best news is that with the NHS system in Scotland, these frames and lenses only cost me £40! That is amazing. Well, plus the flights, the car parks, the taxi etc!! But all so so worth it. Ian recommends seeing him annually. So in the mean time, I am going to invest in a passport for Matthew!! No more fiascos like that again!! A big complaint letter coming to RyanAir I feel. The trouble is, they don’t care do they?!

But all in all, a very productive and exciting week. I am so excited about Daniel and I getting our new glasses. I just really hope that he tolerates them and that they help him. It would be wonderful to see him able to walk outside with confidence without stumbling, and have confidence in other things that regular kids take for granted. So fingers crossed that this works. I will let you know!

Well, time for bed now. Daniel has another SALT appointment tomorrow. So I hope that goes as well as it did this week.

Sally and and