It’s felt a while since I did an update so thought I’d let you all know what’s been going on with J lately.
So, J was diagnosed with Autism in October. That feels a life time ago now but really we’re still at the beginning of the journey.
J is still being seen by our amazing therapist. We’ve been with her since J was 1 and she feels part of the furniture now. She has been my rock and I will always be grateful for everything she has done for us. She has been to see J in his nursery lately and is impressed with how he’s getting on. The social side of communication is still a challenge as he prefers not to direct his speech at anyone. You just have to assume he’s talking to you. J’s comprehension however, is brilliant. He’s above expected level which doesn’t surprise me as he’s sneakily good at listening and remembering things when he wants to.
We are now preparing to move on to community speech services. I admit I’m nervous about this as we’ve been with our therapist for long and knows J so we’ll that the idea of seeing someone new scares me. But I know that J’s speech has come on so well now that he doesn’t need such specialist intervention now.
We have had radio silence from the CDC and services since diagnosis. It’s a weird feeling going from lots of professionals and assessments to nothing (almost nothing, we did have a 3hr intro to autism workshop). I cap for help once as J’s behaviour got really challenging and had some advice over the phone, so it’s good to know that there are still people there we can speak to when needed.
I got a call last week to say we had a place on the Early Bird programme. I’m excited as we applied in December for this and I’ve been anxiously waiting. This programme is great as it helps to understand your own child’s autism, strategies for everyday life and to meet other families in the area with children of similar age. It’s a 12 week programme so excited to get started!
J has been at nursery since January. He’s settled in well and always excited to go. J has an Individual Education Plan and is supported by the local education authority early years team. They come in to see J and give advice and support to the nursery staff. J has started showing interest in the other children. He can now name several children which is a great social sign. He spends most of his day building and flying Star Wars spaceships but I have walked in and seen him in the book area and fiddling with buttons on a house so he’s starting to branch out (even if it is fleeting). Transitioning to different activities and away from Star Wars themed games is still difficult but he’s using symbol communication which does help.
We are on the waiting list to see if OT will help (personally I think, yes!). J still has restricted eating and meal times are a struggle. His sensory issues are challenging and cause a lot of less than desirable behaviour. The lack of danger awareness is a particular concern as he gets a lot of injuries (or near misses) and he doesn’t always tell you or show you he’s hurt. I’ve been taking J to Tumble Tots to try and build his spatial awareness and control of his movements so I’m hoping that all helps.
Today I went for a look around our local special needs school. J’s professionals feel that J would benefit from attending the early years unit to enable him to get support and build skills he’ll need for mainstream schooling. The aim is for J to do a dual placement so 2 days at the special needs nursery/reception and then the rest in mainstream. Hopefully J will then be able to transition to full time mainstream school later on.
It’s a bittersweet feeling. Half of me is happy he’ll get the support from specially trained professionals and staff, in an environment designed for additional needs. He’ll have access to amazing resources, speech therapy, occupational and physio therapy. But the other half has had to acknowledge how ‘different’ J is to his peers. I worry about whether he’ll ever be able to cope in mainstream, will he get bullied or teased for having a dual placement. I keep telling myself that early intervention is so important and will give him a great boost in his abilities. I’m trying to look at the long term plan. But it’s still emotional. I want what’s best for J, but I am in knots inside.
So, that’s it. That’s our update. J is a busy boy and lucky to have amazing people in his life. He’s loving numeracy at the moment and still obsessed with Star Wars. Would I change his autism? No, I’d rather change the world and the way others respond to autism x