Summer and Broccoli

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!

Hanj x

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Soldiering on!

The last couple of weeks have been very varied to say the least. Last week I was struck down with horrible Tonsillitis on top of hayfever, on top of a cold. It was pretty nasty. When I say struck down, that’s not to suggest I actually lay down at any point, in fact, it was one of the busiest weeks I’d had for a long time and there wasn’t any time for me to have a rest. I know that all mums have the problem that they can’t really take a “day off” as such when they are unwell, and have to carry on regardless. I do think though that having a child with disabilities makes it even harder. If it was a case of taking him to a toddler group at the local children’s centre then obviously I would have just changed my plans and stayed at home with a DVD to entertain Thurston. Unfortunately, last week coincided with an appointment with a continence nurse, Thurston’s Physio and Occupational therapy group, a Team Around the Child Meeting for his transition to school, his parent teacher consultation at nursery and a Speech therapy session. I didn’t really have any choice in the matter and had to stick to all these appointments to make sure that Thurston didn’t miss out on any help or support. Of course, this meant that I was a complete wreck by the end of the week, not helped by the fact that Thurston’s sleep is dire at the moment. On average, he is going to sleep around 9pm, waking for formula at 10-11pm and getting up for the day between 1-3am! It’s not really enough to get by on, but even less so when you have infected angry tonsils!!

The appointments generally went well this week and everything seemed very positive. I was really reassured by the visit from the continence nurse. She decided that due to his age and diagnosis, Thurston’s lack of awareness in the potty training area was within the normal ranges. As with many milestones with Thurston, he is expected to get the hang of potty training at his own pace, even if it is later than neurotypical children. I’m so pleased i don’t have to push the issue as I really struggle with potty training at the best of times and I had absolutely no clue of how to approach it with an Autistic child. For now, we are going to carry on with pull-ups but encourage him to use the potty or toilet if he asks. The nurse also helped me to claim for free pull-ups for Thurston which is a service available to any child who is over the age of 4 and still using nappy products due to disabilities. It’s not really a topic that people like to discuss and it did involve a lengthy chat about Thurston’s poo-type where I had to choose from a brochure of pictures of other peoples’ poo! I hope one day Thurston will appreciate all the bizarre things I end up doing for him! Even though it’s embarrassing, I’d encourage anyone whose disabled child is delayed with toilet training to get in touch with a continence nurse. I feel as though a weight has been lifted just by talking to someone ‘in the know’ about it.

Thurston and I have been going to a ‘School Starter’s’ Physio and Occupational therapy group for 4 weeks now at the Child Development Centre. I’m so pleased with the progress he is making there and it’s really giving me confidence that he will be OK at school in September. His gross motor skills are coming along nicely and he is actually jumping on the trampoline really well with both feet in the air at the same time which is a triumph! To start with I dreaded going to this group to be honest. I’m not really a baby-group type person, and struggle with the enforced singing and nursery rhymes. However, I’ve started to really enjoy it now and it’s so lovely to see how proud the children are of themselves when they achieve something they couldn’t do the previous week. The parents there are the complete opposite of ‘competitive’ parents and it’s lovely and refreshing for everyone to be happy for another child’s achievements instead of comparing them. There’s no point in comparing them because they all have different disabilities and different strengths and weaknesses, and all the mums realise this and are happy for the other children regardless of their own child’s abilities. I think this is a really important lesson in motherhood, because even in children without disabilities, they all do things in their own time, and being competitive about raising children really can make motherhood miserable. I think everyone should come and visit our little group one day to see how it’s possible to be happy and proud of other peoples’ kids!!

The Team Around the Child meeting at the school was much easier than I expected and my voice held up for the whole time which was lucky! I’d written down some questions on my iPhone before we went in so that I didn’t get too flustered in front of all the people. There was our Key Worker (who has now OFFICIALLY closed our case so no need for her to be at the next one!), the Specialist Teacher, Welfare Officer, Inclusion Leader, Nursery Teacher, Head of Key Stage 1 and Thurston’s new one to one Teaching Assistant for September. It was lovely that Alex could make it too, as he was laid up from his 2nd spinal surgery last time and  I had to go it alone! All our questions were answered about his starting school in September and I don’t have any major worries about it at the moment. The only thing I might struggle with is encouraging him to eat fruit over the Summer so that he will be able to eat some at school snack times! His Organix gingerbread men might tempt the other children away from the grapes and carrots! I do worry that people think I don’t want Thurston to eat healthily when it’s completely the opposite. I spend most of my time worrying over his nutrition, and even took an Open University course last year to try and learn more so I could help him. I make sure he has his specially fortified formula and prescribed vitamins every day, but he really struggles with foods that aren’t dry and boring. I know this is true of lots of little ones with Autism and it is a worry. I try to make his chicken goujons and beefburgers homemade whenever possible, but I am really struggling with encouraging him to be more adventurous with his food. Since he has had medical issues with his swallowing as well, I do wonder if he will ever move on to different textures of food, and I’m not really sure where to look for advice.

Thurston had a great time at his Speech Therapy appointment and steamed through all of his tasks without a hitch. It did occur to me that since he’s been having Speech Therapy from the age of 1, that he has simply learned ‘how to do speech therapy’! I’m no expert, but I wonder if because he’s been doing the same tasks over and over for years in the same room, if perhaps he has actually just memorized the routine of the speech therapy sessions!! Most of his talking and phrases come from copying others, and is very echolalic, so maybe he has mastered speech therapy in the same way?! How sneaky!

After the busy and poorly week, I could have done with a weekend in bed, but instead I soldiered on to London for the day on Saturday to celebrate my best friend’s Hen Day. I took every tablet I could get my hands on, and it was definitely worth it! It was quite a relief to be away from the children for a day actually, and somehow even though we went all over London to Kentish Town, Bloomsbury and the South Bank, went bowling and to a circus, I feel like I got more rest that day than I had all week. We had a fantastic day and it all went without a hitch which I was pleased with as Maid of Honour! It was quite nice to just be me for a day instead of a mum, and chat about all kinds of nonsense with some lovely girls. The Cantina vintage circus on the South Bank was really magical and right up my street. I’m so glad I forced myself to go, and even though my tonsils didn’t thank me for it, my mind certainly did and I felt really invigorated afterwards!

The rest of this week has mostly been spent taking care of Thurston as he has been what I can only describe as ‘iffy and suspicious’! He hasn’t got a temperature or been sick or anything but he just looks ‘off-colour’. His eyes are sore and he has a mouthful of ulcers which are really upsetting him. It has also been 5 days now since he last did a poo so that can’t be nice! He has been really distressed and keeps sobbing whilst muttering “what’s goin on?”, it’s terribly sad.

Tomorrow he is going to spend the day with his Dad who is something of an expert at baby massage and so I am sure he can get the poop out of him!! I am going to take my Driving Theory Test which I have zero confidence that I will pass, but it’s worth a shot! Wish me luck!!

Thanks for reading,

Hanj x