I keep meaning to keep a kind of ‘Thurston Journal’ because he makes me laugh, weep and amazes me on a daily basis and then when I come to write a blog post I can’t remember any of the things that happened. I would love to update the blog more frequently but honestly, Thurston has my computer a lot of the time. In fact I’m writing this in the WordPress app on my iPhone. Thurston is currently using my crummy laptop to update his spreadsheet of Ninja Warrior UK contestants: names, ages, occupation, fastest times, position in the competition etc!!
At the end of last year, I was really starting to panic that Thurston was slipping away from me and heading into a regression. Over the last 6 months or so, we have lost a huge amount of eye contact. We have to really work to get eye contact from him now and even then it is fleeting and often exaggerated with huge wide eyes and pronounced blinking which is emphasised with his oversized anime-style eyelashes. As well as that, he seems to have acquired some new tics. Some are sounds, such as sucking his cheeks into his mouth and others are gestures like his ‘skywriting’ where he uses his hand to write in the air. He was very self-motivated and only satisfied when doing exactly as he had planned.
A couple of weeks ago, school also raised some concerns. His 1:1 has known him since he was 4 and so knows him very well. She observed that he was having periods of ‘absence’ where he was in a trance and unresponsive to everyone around him, a few times a day. After a quick trip to the GP and a referral, I took him to be seen by a paediatrician really quickly. He explained that Thurston is having a form of seizures. Either they are a type of seizure associated with Autism called focus seizures, where Thurston’s brain becomes overwhelmed and effectively removes him from the situation. The other option is that they could be a type of epileptic seizure called Petit Mal which is also common in autistic children, but can be treated. So, he’s referred Thurston for an EEG test to try and discover which of the two it is.
Before I realised there could be an explanation for the sudden change in Thurston’s demeanour, I decided to be a bit more proactive and change things up a bit to distract him and also to help him to enjoy our time together a bit more. I know that sometimes he can find it harder to cope with home life than school life. It’s unstructured, people are always trying to touch his stuff, he doesn’t have an adult’s undivided attention etc etc.
So now we try to incorporate something that Thurston enjoys into our activities. Over the festive period we discovered 2 new things that Thurston is interested in. Stick Man & Ninja Warrior UK (see above!). As a New Year’s resolution we had already decided to be a bit more active as a family and take more walks (and stay away from shops with the kids as much as possible!). We are really lucky to live right on the coast and so we have our pick of dozens of beaches as well as countryside and nature walks. It’s been surprisingly easy to get Thurston excited about these outings by marrying them with his interests. When we are walking through the countryside we are always looking for our own ‘Stick Man family’ and find the ‘family tree’ to return them to. Also, you can add Ninja Warrior events to any walk or playground with ease! I think it’s has definitely the time we all spend together and we’ve all managed to share a lot of laughs with Thurston on our outings which Thurston has named “The Miles Adventures”!
We’ve got a few weeks to wait before his EEG and finding out what’s going on with him. However I’m really pleased that I’ve managed to make a small difference to his wellbeing at home and helped his siblings to have fun with him! Even though I haven’t started the ‘Thurston Journal’ yet, I must share his latest excuse for why he couldn’t possibly go to school one day this week:
“My shoes are too fitness and my thumb-up is hurting!”