I'm not really sure how it's been so long since I last blogged! I had planned on writing in June when it was a year since diagnosis, but then the laptop broke and time has ran away with us.
River is developing at such an amazing speed, especially his speech. I wish I had the words to describe watch it feels like to wonder if your child will ever speak and then have them talk to you every day. It feels like such a blessing. To finally start piecing together what's going on in his mind is just incredible.
Now that River has found his voice, we're discovering that he's a very bright boy. He has a love of letters, numbers, shapes and colours and is quite advanced in these areas. So so proud!!
There's so much I could say about the last few months but I'm not sure where to start so I'll just jump right into where we're at now:
WE'RE POTTY TRAINING.
I got a book from the library all about potty training children with autism & developmental delays, to prepare myself for possibly training River in the new year. However, the author of the book managed to train her autistic son when he was 2 years old and non-verbal so I thought- why not just do it now? He was asking to have his nappy changed after no.2s, was getting better at sitting for decent lengths at a time and understood "first xyz, then xyz" so could essentially be bribed to use the potty (I prefer to call this positive reinforcement!)
This week was half-term so I thought it would be a good time to start. The book advised not to start on a Monday as Monday is always a bit of an unsettled day, so we decided to start on Tuesday. We prepared by:
- Decorating the bathroom ceiling with Thomas the Tank Engine stickers
- Buying 20 pairs of pants
- Making a Thomas-themed sticker reward chart
-Buying sticker books as a motivator to stay seated on the toilet
- Making a simple visual timetable with PECS cards outlining the toileting routine (Pants down, sit on toilet, pants up, wash hands)
- Making a First/Then sign (first wee in the toilet, then sticker chart- although this has now been changed to chocolate)
-Buying a toilet insert seat & footstool
There are so many extra things to think about when potty training a child with autism. There are a whole host of sensory questions to answer like is the bathroom too overstimulating? Is it too busy/bright? Too echoed or cold? Does it smell of cleaner?
As autistic children don't do well with change it's recommended that instead of using a potty or toilet insert seat you should just go straight to using the toilet so you don't have to retrain them to use a normal toilet at a later date. However, River was terrified of falling down the toilet so an insert seat was needed. Also, he has vestibular difficulties and doesn't feel secure if his feet aren't anchored on the floor so we bought a stepstool, but his legs aren't long enough to reach it. He also struggled to sit on the potty as his motor planning skills are weak and he doesn't have the balance and control to crouch down onto something that low - so we're using a potty chair instead which is proving more successful.
We've just finished Day Three and there is still a LONG way to go, but we are making progress. He's happy to sit on the potty chair for lengthy amounts of time, he has done several wees on it and a no.2, and tells me when he's having an accident (most of his speech is echolalia so instead of saying, "I'm doing a wee" he usually says, "We don't wee on floor" or, "Wee on potty."
So he's doing well! I'm not sure how we'll ever leave the house again as he's not even wearing trousers yet, but it is only Day Three!
When I'm being rational, I think that if he really doesn't get it at all and it's a disaster we can always just try again in a few months. But the crucial difference between training a neurotypical child & an autistic one is that with a NT child, you know that's it's highly likely they will be trained by the time they start school, and they want to be a big girl/boy, do what the other children are doing etc.
But for us, that isn't a given. He might not be trained by start of school. He might not be aware that other children aren't wearing nappies. He might not see any problem with being 12 and still not toilet trained, as he lacks the social awareness to realise these things. So it feels like there's this pressure to get it right, to toilet train him properly, because if I mess up, he may end up still not toilet trained as an adult. Like it's down to me to decide how to train him, how to respond to accidents and successes, how to make him realise that change isn't scary and bad. That if I don't think about the bathroom being too cold or too bright, if I forget to show him the visual cues, if I praise him too loudly and freak him out or don't praise enough and miss the opportunity, then he will leave secondary school still in nappies.
It probably sounds a bit melodramatic, but it's not that uncommon. I asked on an autism forum recently for advice and asked how old other people's kids were when trained. I got 6 replies- one said her two autistic children were both 5.5yrs when trained but still had problems years later; another's son is 6 and is trained for wees but not poos; another's was 3yrs 2 months; another's was 10 years old, and not night-trained until 13; another's took 5 years from the start of training to be fully trained; another's is 6 and still in nappies.
So that's where we're at with potty training. I want it so badly for him- to be as independent as possible- and his autism means he's not going to instigate that independence so it's our job as parents to always be pushing him, and pushing his boundaries.
In other news- we have decided on a school! We're hoping for him to get a place at an autism resource base that is within a mainstream school. It has a dedicated autism teacher and teaching assistants, who will know how to help him learn. He can spend as much time in the resource base as he needs, but also integrate into the mainstream class as much as he is able to cope with. It's a tiny school with only 3 classes which I think is perfect for him.
We've applied for his statement of special educational needs and will find out by Christmas whether or not they think he needs one. Fingers crossed!
His speech is really coming on which is just fantastic. We have small sentences now such as, "I want more raisins please" or "I want go downstairs please."
Think that's about it for now- I shall blog more soon!