Communication frustration 

How do you communicate with a non verbal child?


Reilly understands pretty much everything we say to him. He doesn’t always acknowledge that we’ve spoken but I’m pretty certain he’s heard us none the less.

I’m astounded at how well we manage to be honest, we always eventually seem to get to where we want to be and to what he needs. Probably through years of just knowing Reilly and what makes him tick. Reilly doesn’t nod or shake his head either, these tiny gestures alone could help us 1000%.  It is heartbreaking though during a meltdown or when he is unwell to not be able to comprehend what is happening or how to fix it. Not knowing how his day at school was or whether he’s not comfortable around someone and we can’t put it right.

Reillys preferred method of communicating at the moment is to take you by the hand to whatever he wants. If he’s not happy he screams, cries and throws things. If he’s happy you just know it, it’s there to see he’s cuddley, smiley and an absolute joy.

We tried makaton like Mr Tumble. We attended sessions to learn how to do it. Simple hand signs that eventually Reilly would pick up on and use spontaneously. Problem was holding Reillys eye contact long enough for it to click.

mtw

 

We have used this book More Than Words  (pricey but worth it and will resell) for over a year now to help understand the different types of communication problems and the exercises they recommend.  Its a very good book very easy to read with lots of diagrams and clear instruction.

 

 

PECS (picture exchange communication system) is what we are trying to use at the moment. I bought hundreds of pictures ready laminated from eBay. I attached magnets to the back of the pictures that I thought Reilly would use the most and attached them to a magnetic board. Makes me sound like a blue peter presenter doesn’t it? Far from it, the pictures stay on the board for approximately 1 hour on a good day. Reilly likes to take them all off and scatter them about the house.
PECS does work though and we will stick with it, when he is bored he brings the bus and slide pictures which usually means he wants to go to soft play. He will bring the picture of some chicken nuggets when he wants a trip to McDonald’s but that’s about it for now.  I keep photographs on my phone of places we may visit to limit his anxiety when we go out in the car.  It is important that he understands where we are headed to make him more comfortable and eliminate fear.

 

This is an example of a good PECS board, how it should look.
this however is how ours looks today with added scribbles

Something we were encouraged to do is put the fridge in our garage which is locked so instead of Reilly being able to just go and get what he needs he must communicate to tell us to open the garage door, this would be a winner if Reilly wasn’t so fiercely independent. He would rather create a climbing frame to reach the lock. He’ll pile pans on top of the washing basket or dining room chairs to gain some height. All of our dining chairs now live in the garage and only come out once a year at Christmas.

Other than that it’s guess work and trial and error. Frustration rules the day most of the time. We have locks on the outside of the bathroom to stop Reilly getting in. It’s really difficult to make him understand that yes Lightning McQueen might need a car wash but leaving the plug in and running water continuously is not how it’s done. I could switch the tap off 200 times and he would never tire of turning it back on.

The biggest problem we have at the moment with communication is sneezing and coughing. If I cough Reilly will attack me like a banshee he pulls my hair, hits and scratches. He has had me in tears on occasions.  He’s not that bothered about other people doing it although he has in the past hit me for someone else’s cough. We’ve tried warning him that it’s coming, tried turning it into a game, made songs about it absolutely nothing works, it devastates him. Maybe it’s because some autistic people feel pain attached to sounds, maybe he has misophonia an extreme emotional response to specific sounds.We just don’t know he can’t tell us and its heartbreaking!

This for me is the most difficult part of Reilly’s autism. I cannot bare the thought that we may never have a conversation but I am hopeful that he will talk, it’s not uncommon for children with autism not to talk until later years.  Just try for one day to imagine you cannot communicate with your child and think about how you would get on. I would predict tantrums and frustration from both parent and child because it’s hard! It’s something that I never had to give a seconds thought to with things 1 & 2, I just took it for granted like most of us do.  I’d love to see the day makaton and sign language are brought into the curriculum so all our children can communicate ❤️

not sure whether this is good or bad 🙈 can you guess where it is?

 

I am jealous. There I said it. 

This post has done the rounds a lot in the last 2 years about how jealous I was of everyday things.  Ive just read through them again and felt I needed to update them (in brackets and bold).  Amazing how your outlook can change, i’m always learning.  I love this boy to bits.

I’m jealous. There I said it.

I’m jealous of other families that don’t struggle like we do – I am jealous, I’m not proud of it. I am a green eyed monster. There are lots of things that make me jealous things that you probably haven’t given a thought to.

  • I’m jealous that you can go food shopping with your child and not have to dump your trolley and get them out because muller have changed their packaging or an unexpected tannoy announcement causes a meltdown. (2017 edit – I hate shopping anyway, online is the way to go).
  • (2018 edit – shopping is pants, still)
  • I’m jealous that your child wants to put carrots out for Rudolf, watch Elf and get excited at Christmas.
  • (2017 edit – Tricky one.  I think I miss tradition. Alex and Ellis are too old and I miss it.  Reilly does not. Me me me lol.  I still watch Elf, I still put the carrots out, the reindeer dust might land on top of the wheely bin but who honestly gives a f”ck?) Santa still gets here.
  • (2018 edit – haha! Up yours Reilly is loving it! We’ve got a plate for mince pies, he’s bought his carrots and we are having it this year!) .
  • I’m jealous you can stroke your child’s hair and take him for a haircut.
  • (2017 edit – I stroke it in his sleep, his hair is long, no biggy).
  • (2018 edit – after his hair tatting like a spaniels and his cutting his fringe his hair is now shorter. I can stroke it slightly more. Me me me).
  • I’m jealous that going on holiday for us means 6 months of displaying photographs as social stories of aeroplane steps, engines, seat belts and still having no clue whether he understands it all or not.
  • (2017 edit – there are worse things I could be doing at least we are doing it).
  • (2018 edit – been and talked to the airport about becoming more user friendly with ideas in the pipeline. We look at holidays daily on the internet and trust me no prep is required he loves it).
  • I’m jealous that your child does the actions to Incey wincey spider and sings along.
  • (2017 – never liked nursery rhymes anyway, usually creepy full of stories of wronguns).
  • (2018 edit – nursery rhymes are still crap and Reilly says moo and meows on old MacDonald’s farm. That’s enough for me).
  • I’m jealous you go to bed and sleep for more than four hours.
  • (2017 edit – Melatonin saved my life, true story). 
  • (2018 edit – melatonin continues to keep me and Reilly on an even keel).
  • I’m jealous that you can give your child food that is not just coloured beige.
  • (2017 edit – beige is nice, beige is popular).
  • (2018 edit – he now eats pizza and the yellow bits off haribo eggs, he’s healthy, it’s no biggy).
  • Im jealous of your play dates.
  • ( 2017 edit – sometimes – but I like it just me and him)
  • (2018 edit – still like our own company, our rules, our way, we leave when we want).

  • I’m jealous of family trips to the cinema. (2017 edit – £50 for a family trip and counting – you can keep it!)
  • 4 attempts at Peter Rabbit, still too expensive you can keep it).
  • I’m jealous that when your child is ill you can fix it and know what is wrong or where it hurts.
  • (2017 edit – STILL JEALOUS)
  • (2018 edit – still jealous)
  • I’m jealous that any snippet of spare time I get to spend with my husband is spent discussing worries.
  • (2017 edit – everyone has problems maybe thats what you do to?)
  • (2018 edit – I am a worrier, if it wasn’t Reilly it would be the river in York for my oldest at Uni, bullying for my middle child, health, money list is endless).
  • I’m jealous I don’t have time for friends. (2017 edit – YUP but i’m trying)
  • (2018 edit – must make more effort).
  • I’m jealous that your child can tell you they love you.
  • (2017 edit – He loves me I know it, I just haven’t heard it, he traces my face with the tip of his nose and it says it all).
  • (2018 edit – he signs it to me. I feel this is extra special ❤️

But you know what I am also?

Proud, extremely proud.

Have you any idea how hard it is for him to function in this chaotic world? He has the determination of 10 men, the independence of 20 and the stamina of 100.

I’m proud of every tiny step he takes and celebrate each one. Be it touching a piece of fruit, making a new sound or completing a 300 piece jigsaw!.

I’m proud that he is loving.

I’m proud that he is smart.

I’m proud of how hard he tries.

I have 3 beautiful boys and I am incredibly lucky. There are people wishing they had what we have but just sometimes I just can’t keep that green eyed monster at bay.

(Green eyed monster is kept at bay most days I am happy to update).

I feel sorry for those who don’t have a Reilly in their life, amazing what can change in a year.

Another year down more lessons learned, more understanding of my Reilly.