J’s Journey Update: autism and beyond…

It’s a beautiful sunny day. Daddy and J are busy playing Star Wars on the climbing frame so I have a rare moment of peace (except for the sounds of explosions behind me). I thought now would be a good time to reflect on everything that’s gone on lately, and changes that are happening.

Speech Therapy

As you may have read in our last update, we were signed off specialist speech therapy and we’re out on the waiting list for community plus. This is where children have more complex speech needs but not severe enough to require specialist intervention.

Well we have now been assigned a new therapist. It’s a male this time which will be interesting to see if J responds any different as all his professionals except his paediatrician have been female.

J’s speech is coming on so well. His ‘learnt phrases’ and repeated conversations are really clear, but his expressive speech and requests are still needing support. We continue to use pecs and symbols as speech prompts for him. To be fair it’s the social side of speech that is the most challenging for him. But still I love the fact I can have Little chats with him now.

Early Bird

We continue our Early Bird. This is something me and hubby do together. It’s without J, so chance to talk, get advice and learn more about living with autism. It’s run by the community team via county council so it’s free which is great. Once the course is finished I’ll write a full post about it.

The course runs into July but already it’s been super helpful. My husband in particular has found it useful as he’s learnt more about supporting meltdowns and sensory side of J.

Education

J continues at his nursery. I’m so glad I put him in for stretched funding. This means than instead of 15 hours a week, term time only, we get less hours a week but all year round. I think this term (summer term) that’s 9 hours a week funded but that’s all summer term and the summer holidays. This means we don’t have to deal with those gaps and routine changes. J only goes 2 half days so it’s not like he’s been overloaded with too much time there.

Good news is that J has got a place in the specialist early years unit which is a special needs provision for nursery and reception. He’ll be doing a dual placement so 2 days there and 2 morning at Nursery. It means he’ll have access to trained professionals who can help J develop skills so he can transition into full time mainstream school at some point…and if he can’t deal with mainstream then it gives him an educational provision which is suited to his needs.

We start visits in September. Wont lie, I’m anxious about it. But I know it’s going to be a huge help. It will take pressure off his nursery too as it means they can focus on his educational progress and social opportunities where the specialists unit can support his therapies and learning strategies. That’s the plan anyway.

Sensory Issues

J continues to be both a sensory seeker (vestibules, light and sound) and a sensory avoider (textures, orally and visual). The avoiding affects his eating and play skills. He only likes to eat dry food which limits his diet significantly. J needs enhanced vitamins to make up for this.

We have just started a ‘Touch to Taste’ group. This is run at our local child development centre and is food based play where children can explore, touch and taste. This week was pasta and water. J loved the dry pasta and putting into the boat toy. Once the pasta started getting slippy he switched to playing with the water toys instead. Next was angel delight. J helped mix the ingredients and actually touched it lightly whilst still quite solid. He didn’t want to eat it so I said he could feed me. After two mouths falls I suggested he fed himself. I think he forgot it had actual food on it as he put the whole spoonful in his mouth.

His face was a picture. He spat it out the second it touched his tongue and then wiped his tongue along my cardigan. Being a parent is so glamorous. He instantly left the table and went to play with toys instead. But it was still a positive. He had engaged and explored. Whether it was a mistake or not, the angel delight went in his mouth.

Typically it set off his allergies as they had forgotten his soya milk. I could have refused to let him join in but I figured the ends justified the means. I knew he wouldn’t invest much (evidenced by him spitting it all out) and just gave him piriton once the reaction started. He was right as rain after few minutes.

Sometimes you have to make decisions based on long term goals.

New concerns

Lately J has had difficulties with his legs. He wakes up crying saying they hurt. He can’t run or walk far without wanting a carry or the buggy. He’s also rubbing his wrists and wanting me to hold them after his been stimming or sensory avoiding. I’m going to have chat with Gp as not sure if autism related, growing pains or something else.

So overall it’s still a busy time. J continues to love his Tumble Tots gymnastics sessions, is still obsessed with Star Wars (but developing a dinosaur interest right now) and amazes me with his number skills. Check back with us soon to find out more about Early Bird, speech activities and to read more home learning activities that we’re exploring.

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