I didn’t actually realise how long it had been since our last update! In the space of the near 2 months since my last post, T has grown about 7000 inches in height, and also appears to have swallowed an old wise man. He has become… profound. He has all the wisdom of an owl, in the wobbly body of a 10 year old boy. Yesterday he was instructing me on the best methods of speeding things along in labour – as the arrival of Baby Riley is now only a mere 13 weeks away…
T: “Mum, listen. You need to get an exercise ball. Then basically, you sit on it, and bounce up and down and rock a bit. Then the baby comes.”
Me: “Fab, thanks T! I’ll make sure I have one on stand by when I go into labour.”
T: “Erm Mum, why would you go into politics when you are just about to have a baby?!”
I swear, he’s like Gandalf crossed with a completely naive Peter Kay. Gandalf Kay, if you will.
Another corker, was driving home last night after seeing WWE Live (more on that in our next post!) and he announced that he ‘forgot’ to watch Wrestlemania when it was on…
J: “How do you ‘forget’ to watch it T, when you watch wrestling all the time?”
T: “Its ‘time’ Dad. It just goes so fast…”
How right you are Mr T. It truly does fly. So much so, that we are now looking at Secondary School options for young Master Riley. T is currently only in Year 5, but we have been recommended to start looking early, due to the complexity of T’s medical conditions and the support he will require. We FINALLY have a draft through of his Education Healthcare Plan (hurrah!) so this helps, as we can then advise any potential schools on the level of funding they can receive to deliver said support.
Normally, when it comes to selecting a school, the standard process would be to go to some open evenings of the schools within your catchment area and then apply through the local authority. We can still do this, however we have a few more options available to us due to T’s EHCP. Our decision will be based primarily on the school who is going to be able to support him the best – both academically and in terms of his well-being. This is likely to result in a choice that distances him from the majority of his friends at Primary School. Its not 100% confirmed that this will happen, but it is likely. And that sucks. However, T’s wonderful Primary does not just have one or two secondary schools that their students feed into, they will often spread across 5-6 different Secondary schools due to the area the catchment covers. We are hoping that this will make the transition process easier for T, as his friends (there are only 13 children in his whole year group!) will all (probably) be in the same boat. I, however, am traumatised at the very prospect of him leaving his little bubble of comfort… and I think I may need copious amounts of gin when the time comes…
T’s medical team have made some pretty strong recommendations in terms of Secondary education, and J and I visited school number 1 with T’s SENCO the week before last. I was absolutely blown away. The SEN provision at this particular school was nothing short of wonderful. 48 Teaching Assistants, trained physios, a room with facility for T to nap (should he need it), and staff who quite obviously love their job. As a teacher of secondary education, I embarked on the trip with a (shamefully) critical eye, however I had no need to be dubious. Both J and I think this is going to be the best place for T to continue his learning journey. I think it should also be noted as well, that to take on a child with needs as complex as T’s is a challenge for ANY school – and thats not T’s fault, nor the school, its just a realistic view of circumstance. It is a challenge. He will need a lot more physical, emotional and academic support than other students. The team did not seem phased by this in the slightest though. Plus, they also have wheelchair sports. T was BUZZING when we told him about that, as you can imagine. He now can’t wait for a visit… which is the next step! What was a terrifying situation, giving me no end of anxiety, now seems slightly less scary… and hopefully T will feel the same post visit. I’m not ruling out the need for gin when the time comes though, so maybe expect some slightly waffly posts around September 2020.
In other news, T had a review with his Neurologist last week. J took him to this particular appointment as I had exams on at school. Generally a positive visit, however there is now a notable curvature to T’s spine, which is a common symptom of Friedreichs Ataxia, and can have varying levels of severity. T’s lush OT and Physios had already picked up on this and adapted his equipment/exercise routine; however we are now being referred to a spinal specialist. Trying not to ponder that one too much at the min – mainly because we don’t fully know what we are pondering yet! The worrier in me (she’s a bitch I can assure you, she loves worrying about random crap… generally at un-godly hours of the morning) is getting much better at ‘parking’ things until they actually need worrying about. So this one is firmly parked for now. In a multi story car park. In Siberia.
T also needed checking for Diabetes – which again is a common side condition of Friedreichs. Now, in order to do this, the Dr needed either a blood or a urine sample. T had a particularly bad experience the first time he gave a blood sample. The nurse almost dislocated his arm taking it (fun) and so the minute anyone mentions “taking blood” he begins shrieking like a banshee (slight exaggeration perhaps) and muttering incoherently under his breath (not an exaggeration at all). So, J decided that urine was the best course of action. However, Mr T had been to tinkle just before the appointment… so the Nurses held them hostage in the waiting room until ‘tinkle time’ took place…
An hour later, they were still sat there. There were numerous cups of water consumed, the sound of running liquids played, a rain dance from J, many prayers to the Tinkle Gods… but alas, Teej could just not tinkle. Eventually, after much cajoling of the nurses (and probs flirting) from J, they managed to beg release from the waiting room. And now, the sample pot is sat looming on our kitchen windowsill (EMPTY before anyone starts freaking out about hygiene) and we are waiting for a prime opportunity (namely a day when me or J can deliver the sample to the Dr before 2.30pm) to attempt to ‘Trap the Tinkle’ – *insert ominous music*.
I fear this may be easier said than done. The pot is the smallest thing known to man. I swear it was made for a Hobbit. I’m not sure I’m mentally, or physically prepared for this task. Especially as, on unsteady days, T’s aim is as accurate as Newcastle United’s attempts at scoring a goal…
So, if you whiff a musty aroma at some point over the next few days in the Humberside area, you are probably close to me or J… who are more than likely covered in piss. But at least we’ll have a sample! Every cloud and all that…
Wish us luck! #trapthetinkle
The Life of Riley's 