It was a busy enough day today. I had a meeting about a project I’m going to be helping out in…more about that in the weeks to come. I take Jono swimming on a Tuesday as well so we did that. It’s part of his physio to help with his back. He finds it hard to swim not he has the metal rods either side of his spine but he runs up and down the pool…and the best bit of all he gets to relax in the jacuzzi afterwards.
Another long overdue blog. We had two trips to Dublin last month (one after the other…always the way). Not for pleasure, both hospital visits. One for blood tests for Lucy and I…to see if we have a bleeding disorder (we have to go back next month for further tests). The other for Jono’s spinal check-up.
Before Jono’s appointment we had a bit of time to look around Temple Bar. It was a lousy day so I only took photo’s with my phone. The one at the top is of the Ha’penny Bridge. The others are in Temple Bar.
If you don’t know Jono’s story he has kyphosis and scoliosis and his spine was very badly curved before he had surgery in 2009. The photo above is before and after. He grew 4 inches just from the surgery. The only problem is now that it’s curving above the spinal rods that he had inserted, so it means regular trips to Dublin to see the doctor.
Thankfully it hasn’t got any worse, so we breathed a sigh of relief as we were worried that Jono might need more surgery, which this time would have meant extending the rods to his neck. So smiles all round as it isn’t needed for the moment.
Jono was delighted to see the X-ray of his spine. He’s also really pleased that Tallaght hospital use his before and after photo for their training. He hopes it might also encourage people who were worried about having a spinal fusion to go for it.
On Thursday I had a bit of time to kill before I had to pick Jono up for an appointment so I decided to go to Hazelwood Forest in Sligo. It’s always lovely to walk around there, especially when the sun is shining…which it kind of was on Thursday.
Eventually I caught sight of the lake and followed it back and found the car, just in the nick of time. I think Jono would have wished I’d have stayed lost because the poor lad ended up having half his toenail removed
Dr Sami Timimi was on the phone. The Tony Humphrey’s article was based on a book by Dr. Timimi. Although it appears it was taken out of context although Dr. Timimi was saying we shouldn’t ‘label’ our children. Which is all well and good but you need a diagnosis to get help for your child. Also in Jono’s case he was a teenager when he was diagnosed with Asperger’s syndrome, he said he answered a lot of questions for him and was a huge relief to him.
If Jono hadn’t got a diagnosis he wouldn’t be in the National Learning Network now and he really loves it there. It’s given him a huge amount of confidence.
All the article in the Irish Examiner has done is put the blame on parents (and I think a lot of parents feel they are to blame certainly in the early days of a diagnosis) and will just fuel the fire of people who don’t believe there is such a thing as autism.
Newstalk also covered the topic and this can be heard here.
Tony Humphreys has stayed silent in all this. It has also been bought to my attention that anyone can be a psychologist in Ireland. You don’t have to be registered….why is this allowed to continue? Surely there must be some guide lines?
On Tuesday Andy wound up in hospital. He only went to the doctors for a blood test, he’s been quite breathless though and having palpitations so she sent him in for tests. I suppose with his past history of blood clots you can’t be too careful. Anyway the hospital were brilliant and did loads of tests and sent him home with a heart monitor on. He won’t know the results for a few weeks.
Wednesday was Jonos monthly meal out with the ‘BEO’ group. This time they went to Shenanigans and he had a great time. Lucy and I went to the cinema to see the Lion King while we were waiting for him. It wouldn’t be my choice of film (I didn’t want to be blubbing over a cartoon lion), but it was grand and I didn’t blub thankfully.
Thursday was a busy day. It was Jonos spinal check up in Tallaght hospital. It’s almost a four-hour journey from here to Tallaght between the train and the Luas. When we arrived Mr. Noel (the consultant) wasn’t there. I told the nurse Jono would need an X-Ray and they would need to see if the curve of his spine had got any worse. She told me it wasn’t down in the notes. So we sat and waited for 40 minutes until Mr. Noel arrived…..and then she came and told us Jono needed an X-ray! So we had to spend another hour waiting for that.
I was getting worried because it was almost 5pm by the time we got back to the clinic and the last train left at 7pm. Thankfully we got seen fairly quickly. Mr. Noel is a brilliant doctor, he showed us the shots of the X-Ray and explained that Jonos back had got 4 degrees worse in a year..which isn’t much at all. So he’s going to just keep an eye on him to make sure it doesn’t get any worse.
It’s said that school days are the best days of your life. Try telling that to the children with special needs and their parents. Due to the cutbacks most, if not all, of the children that had full-time SNA’s (Special Needs Assistants) now have to share them or in some cases only have ‘access’ to them. I have heard of one child with Special Needs only being offered an hour of schooling a day.
Some of you may know that my son Jono has Asperger’s Syndrome, Dyspraxia and kyphoscoliosis. He was lucky enough in that he did have a full-time SNA. Which was all down to the head mistress of the school organising one for us. At no time did we meet the SENO (Special Education Needs Organiser). Jono just would not have functioned in school without his SNA. As his back problem was so severe it affected his ability to write so she did this for him. She also carried his back and books, helped with all his lessons, organised his timetable, took him for a walk if his pain was too much. On the rare occasions where she had to go for a meeting he ended up with school friends having to carry his bag for him…..and we all know how heavy one bag is, let alone two.
So who in their right mind has decided that these children do not need SNA’s. Yes I know the country is in a recession and cutbacks to need to be made, but why are the most vulnerable people in our society being targeted. Why not get rid of the free pre-school places first? I’m not even going to start about the high salaries and expenses the politicians get.
I hope that people realise the SNA cutbacks don’t just impact on those children with special needs, they effect the whole class. To read more about this matter have a look at this great blog.
Also Prime Time did a programme about it last night which is here.
Do our special needs children not have a right to an education?
I went to Nom-Con with Jono yesterday. It’s an anime convention that’s on every year in Dublin. Lots of the people ‘cosplay’ at the convention. There were some really brilliant costumes and everyone went to so much effort. They were all really friendly as well. I took some photos which are here.
Jono got to meet Veronica Taylor who is the original voice of Ash from Pokemon. She also did a voice in Teenage Mutant Ninja Turtles as well. She was really lovely. Veronica also did a question and answer session, there is a short bit of it here (mainly of her doing the Ash voice).
Jono also got to take part in a Pokemon tournament which he thought was great.
We went up on Friday night and stayed in the Maldron Hotel, Cardiff Lane. The photo above was taken from the balcony. I won a break on Facebook from there a while back, so we used it on Friday. It’s a nice hotel although we weren’t there for long. There was a welcome letter in our room and a lovely platter of fruit which was a really nice thought. We didn’t get into Dublin until after 10pm and two taxi’s refused to take us from the station to the hotel because it ‘wasn’t far enough!’ Someone on twitter told me that’s illegal for them to do that. We finally got a taxi to take us which was good as I didn’t fancy walking though Dublin at night.
Jono is off on summer holidays from his course so today we decided to go to Roscommon. We were hoping to get to Strokestown House as we’ve never been there and from what I’d seen on the internet it looked like a nice place to visit.
On our way Jono spotted this telephone box. It’s one of the old Irish phone boxes and they are fairly hard to find these days. We stopped on the way back and noticed there is a Holy statue in it. Catherine tells me it’s a child of Prague which apparently is meant to bring good weather, it’s obviously not working!
We finally got to Strokestown House but it would have cost 12 euro each to get in which I think is mad money. I notice they don’t mention the admission charges on the website. It’s a shame because I would have liked to do a blog about the place but I wasn’t going to pay 24 euro for us. I also think it’s bad that there is no option just to go around the gardens or the house, the ticket is inclusive of the house, garden and famine museum. I also think it’s bad that only 1 euro discount is given to people with concessions.
As we were driving back we saw this statue in the middle of nowhere, surrounded by fields. So we stopped and had a look. It’s a statue for the people who gave their lives in the IRA.
We were looking for the windmill. The sign is fairly hiden in a tree so we missed it on the way it, it’s actually down the road opposite this cathedral. We found it in the end. Again in the middle of nowhere. It’s a lovely building there, there was no one there when we went so we could look inside it but we enjoyed looking around the outside of it.
Thanks to the lovely people at Glenisk, Jono received his new bike today. He’s delighted with it. Thanks to everyone for voted for him too. It was lovely to see so much support and Jono sends a big thank you to you all.
Also a big thank you to The Dutch Bike Shop who heard about Jono’s story and sent him a great bike helmet. There are some very kind people around