Last Friday, my very nice husband Alex (here is his blog www.neveranythingon.wordpress.com) turned 32. Last year when he turned 31, he had come out of hospital a day earlier from his 1st spinal surgery. Since then he has had a day surgery steroid epidural, and this January, he had a major operation to fuse his spine with various pieces of metal and donated bone. I’m so happy with how well he’s done from last birthday to this birthday, he really deserves some recognition for being able to keep smiling, hardly ever complaining and most of all, managing to still do as much as possible with all of the children while he was in so much pain. I’m not sure I could have done it! We celebrated with an Olympic themed party, the opening ceremony, an Indian takeaway and a very large homemade chocolate cake (recipe from The Primrose Bakery Cookbook!). Luckily, Thurston slept through the whole thing so we had a lovely time with the older children which was much needed.
The whole time Alex was laid up with his back, he had been planning to have a tattoo done of the Eiffel Tower. It means such a lot to us as we spent our honeymoon in Paris almost 7 years ago, and it was one of the only holidays we had as a couple without children. The other one was a completely bizarre trip to Cologne in Germany with a very strange family!! Paris was incredible and has such lovely memories for us, I’m hoping to take the children there next year when I (reluctantly) turn 30! A couple of weeks ago, Alex finally had his tattoo done. He booked in with our good friend Dan Frye in his amazing tattoo studio in Margate (www.signsoftime.co.uk), and he did a fantastic job! I took the kids for lunch with some more lovely friends and my sister while he had it done, and he looked so happy when he came and joined us. It might sound silly to be so excited over a tattoo, but when you’ve been forced to be in pain and have some fairly gruesome scars to show for it, I think it’s a really great feeling when you can finally choose what you actually want on your body!
Since it is now the Summer holidays, we have been fairly busy, since every mum knows that the key to surviving the school holidays is “DO NOT STAY IN THE HOUSE!”. I took the children to the brand new Tracey Emin exhibition at the Turner Contemporary in Margate which we completely loved. I am a massive Tracey Emin fan anyway being a Margate-girl myself and it is so exciting that she has put together this exhibition just for our little town. Thurston actually slept the entire time which was a bit disappointing as he has enjoyed all our previous trips to the gallery. I know a lot of people get very nervous about taking Autistic children to art galleries or museums, but I would strongly encourage people to give it a try, as you might be pleasantly surprised. Thurston likes any exhibits with video installations, and was really interested in Turner’s paintings of volcanoes and even commented that they looked “hot”! A lot of galleries and museums are free entry or simply ask for a donation, so you are not losing anything by giving it a go.
Since we do live by the seaside, a lot of our Summer holidays is based on the beach. From June until September, my house is covered with a layer of sand that I never seem to be able to get rid of completely! At the moment, I would have to admit that going to the beach is not something I am very confident with doing by myself just yet. Thurston is completely inspired by the beach which is wonderful, but also means that he will see that he has complete freedom and no boundaries, and make a run for it, whether it is to the next beach on the coastline or through the water to France. He takes up so much of my energy and attention at the beach that it makes it really difficult for me to focus on my other 2 children. In the school holidays, I do struggle with a little bit of guilt at not being able to divide my time fairly among them and I think they must find it very frustrating too. Luckily for me, last week a friend of mine was renting a beach hut near my house with her family and invited me to join them for a day. I took the kids down by myself as Alex was working, and I’m so glad I did as the kids had the best time. We dumped our stuff at the hut and the kids made a beeline straight for the unusually warm water. Thurston was in his element splashing in the water and was so brave walking into water as deep as his chest. Louis and Zeke played with my friends’ children and their Dad who was so incredibly helpful pulling them around in an inflatable boat singing the theme song from “Jake and the Neverland Pirates”. Thurston even sat in the boat for a while, and was so delighted, I wish I could have captured the look on his little face. The children were so well looked after that I felt more than happy leaving them to play while I went back to the hut to warm Thurston up. It was a perfect Summery day!
Even though it is the holidays, Thurston’s therapy is still ongoing. He graduated his little ‘school starters’ group which was brilliant, and really helpful for him. He is now on a 6 week block of speech therapy to try and start him on some new techniques that he will continue with when he starts school in September. He was a little bit frustrated at the first appointment last week as Louis and Zeke had to come with us and were allowed to play in the playground of the Child Development Centre while he was hard at work. He did really well though and worked very hard. His ability to focus on a task has improved so much over the last year and he sat for 20 minutes without sitting on my lap. It’s still quite hard to see him struggle with concepts that come so naturally to most children. Every single aspect of language needs to be taught to him manually and at the moment, it does seem like an enormous task. The new technique involves colour coding the type of word to try to eventually enable him to have a proper conversation. It uses visual aids which are colour coded eg. pink for a person, green for a describing word, blue for a thing etc. It seems quite complicated at the moment, but hopefully he will get the hang of it and we will soon be able to have a chat! Once his session had finished, I sent him to the playground with his Dad and brothers while i sorted out some paperwork. I helped the assistant to compile a “manual” about Thurston to tell anyone who comes into contact with him at school all about his likes and dislikes and how to talk to him. It made me realise how much of an advocate I am for Thurston, and how much more involved in his school life I will need to be to find out how he is doing. One of the best parts of kids starting school is when they tell you what they have been up to (once they have stopped telling you they can’t remember or that it was boring and they did nothing all day!). It does make me incredibly sad to think that I won’t have that with Thurston and I will have to rely on what the teachers and assistants tell me instead. This is particularly worrying now that he has learned to tell me to “shutup”. Whenever he doesn’t want to talk to me (or wants to make everyone laugh) he yells “shutup, shutup mummy shutup”. I can just picture it now when we are leaving school “did you have a nice day Thurston?” “shutup mummy!”.
Another delightful habit the boys have taught him is to make a fart noise whenever they ask him what noise his bottom makes. Aren’t boys great? They have clearly cottoned on to the fact that you can make Thurston say whatever you want and he is now their own personal parrot, ready to amuse them whenever they are bored. Mind you, I suppose it is some way to compensating them for all the times he has whacked them on the head or smashed their toys. This last fortnight, Thurston has also taken to carrying a large head of raw broccoli wherever he goes. Thurston has never been attached to a particular toy or cuddly animal but “Broccoli” is now a firm best friend and they cannot be parted. At first he was satisfied with toy vegetables until he came to the supermarket with us and realised that actual vegetables were much more realistic! After screaming for 2 aisles after the fruit & veg section for “Broccoli”, I made Alex turn back to go and get some in the hope that this was the start of a healthy eating initiative. He held “Broccoli” all the way round the supermarket and was catatonic when I broke the news that the cashier would need to scan it. Since then, “Broccoli” has been everywhere with us. He eats breakfast with “Broccoli”, watches TV with “Broccoli”, takes “Broccoli” in the garden, cuddles “Broccoli”, packs “Broccoli” in a little lunchbox to keep him safe. After about a week, “Broccoli” began to turn yellow and fall apart and generally looked pretty grim. I tried to entice Thurston with a possible new friend “Onion” but he was having none of it. A fresh “Broccoli” was bought and secretly swapped overnight and now “Broccoli” has had a lovely makeover and looks beautiful. I wonder how long I will keep having to buy replacement broccolis for………
Thanks for reading!