This was always going to be a funny sort of week & a bit of an emotional one, as Monday & Tuesday was due to be the Brainwave assessment & Friday is the long-awaited paediatrician assessment.
Our two days at Brainwave were supposed to be 9:30-4:30, but River naps 1:30-3:30pm (closer to 2-4pm since the clock change) & will only nap at home in cot in blacked out room. The therapists seemed a bit thrown by this, although I did mention it when booking the assessment & I'm pretty sure most toddlers River's age still have a long nap after lunch. They initially wanted us to come back for 4pm to discuss their findings from the assessment but later agreed it would make more sense for them to visit us so that River's routine isn't disrupted.
So the day started with taking a history of River & discussing his strengths & weaknesses. River wasn't really interested in any of the toys in the room & there wasn't space for him to run around so he started to get agitated, so he got through the next hour with constant snacks (food is the only thing that will distract him when in an enclosed space with nothing to spin!) We then had a break whilst the therapists chatted about River & River ran around outside.
We then all went into one of their large therapy rooms, & this is where River went downhill. There were lots of toys & bright things but River wasn't interested in any of them. The therapists wanted to try out a few physical exercises with River, but he just wanted to cling onto me or Tim the whole time. I found a couple of wooden shapes that were like CDs, & he briefly was happy to focus on spinning them. However, after around a minute of that he was then standing by the floor-to-ceiling windows crying to get out. When I tried to pick him up he just climbed up me & pulled my hair, he was so overwhelmed & panicked.
It was quite obvious that River wasn't going to co-operate with any of the exercises they wanted to try out on him, so we moved into the sensory room. River LOVED their sensory room, he did on our initial visit too. The lights are turned off, the floors & walls are padded & there is a large colour-changing bubble tube in the corner that River was transfixed by. He went very quiet & kept his face very close to the bubble tube for ages, which gave us time to chat to the therapists. There was also a little bit of space for him to run up & down & 'stim' (arm-flap, open & close fists) which helped.
After maybe 30mins, he got frustrated & anxious again. So out came the food again which calmed him- so by 12:30 he'd had a bowl of cereal, about 10 grapes, a large apple, a banana & 2 rounds of tuna sandwiches! By around 1:15 he'd had enough so we took him home for his nap. God knows how he'd have coped if we'd attempted the whole day!!
The therapists then came to our house an hour or two later to discuss their conclusions & talk us through River's 30-minute-a-day programme. They felt that it is his sensory issues rather than any possible autism that needs working on. They explained that one of the main reasons for all the running he does is because he has a lack of awareness of where his body is in space, so there are lots of exercises to increase his body awareness like body brushing & joint compressions that they hope will help with that. There are also exercises designed to stop him toe-walking (although he only walks/runs on his toes when he's excited) & some object recognition exercises.
We were due to go back the following day to be taught the various exercises but unfortunately one of the therapists had another appt & the other wasn't feeling very well, so they are coming round for a home visit next week instead- which will actually be much better for River as he really didn't tolerate being at the centre.
Only time will tell if the programme will make a difference to our little River. There is a lot more emphasis on his physical behaviours & physical exercises than we expected, & not a huge amount of focus on his social & communication needs which we feel is what we should be focusing on, but I think Brainwave's theory is that by dealing with his sensory issues we can then focus on all the other stuff. I guess we have nothing to lose & everything to gain at this point so we'll give it everything we've got & keep our fingers crossed.