If you read our blogs religiously then you will know exactly what the crack is with our Joanne Jones journey, if you don’t then i’m going to try and tell you about the past year in brief;
We struggled for speech and language support after being discharged by NHS SALT due to ‘being qualified and experienced and the home well resourced’ to support A&R.
We looked around for private Speech and Language Therapists, early years development coaches and came across Joanne Jones and her packages. She is all about empowering parents to be the best therapist for their children. She is very 21st century. She has over 20 years experience of working as a Speech and Language Therapist, opened her own pre-school / nursery and has 4 children of her own. She designed online / distance learning packages that are ran on teachable, with podcast type learning, recordings, powerpoints and videos. She also gives 1:1 consultations, daily coaching via social media, weekly LIVE themed Q&A sessions and hosts group video calls with other parents who are involved in the programme. These parents are from across the globe with children of all ages, backgrounds and levels of communication.
As someone with over 10 years experience of working in education, my opinion is this – Her business model and ability to support us really is astonishing. It has been life changing for us!
We started on a package known as The Powerful Parent Programme. The first step was to send videos of Austin and Rory playing and interacting and communicating (or not in our case) and then to have a 1:1 video call consultation with her. We spoke for almost 2 hours. It was such a novelty to have so much time to go into so much detail with a professional like Joanne. We so often get a 10-15 minute rushed appointment with NHS professionals and I felt like I got more from our first video call than I had gained from our entire time with the local Speech and Language team.
During the video call, Joanne did a lot of listening, I spoke all about Austin and Rory, their prematurity, their medical history, their eating difficulties and my concerns about Rory’s lack of eye contact and interaction.
Joanne explained that there is lots of recent research into the effects of prematurity. We know this is true. Only now have premature babies like A&R born at 26 weeks, been living long enough for us to see the long term effects. Many professionals, including our own Health Visiting team have insisted that when they are 2, they are just 2 like every other 2 year old because they have ‘caught up’ by then. But research is now making its way through the ranks to show that this isn’t true. I know of schools who have had staff training on the effects of prematurity and how it is effecting children on entry into reception. This fills me with excitement that by the time A&R are in school, professionals will be more aware and I won’t have to fight as much for recognition of their journey.
Joanne explained that it is very typical for premature babies to struggle with sensory overload, if you think of the invasive procedures they endure day after day often by the hour as tiny tiny babies, they can struggle to process their senses as they get old enough to recognise it. Joanne explained that feeding is often an issue because when babies are tube fed a set amount at a set time like A&R were, they don’t recognise hunger, or the feeling of being full, and so they just eat when they are given food and it has an impact on their longer term eating habits too.
There is lots of research filtering down too by Professor Barry Carpenter (OBE, CBE) about the number of children entering school with communication, language and development delay. Of these children, many of them have survived premature birth or have required invasive procedures such as supported nutrition and ventilation. A&R fit both of these characters.
Joanne Jones fully appreciated the impact that A&R’s journey from premature birth to now has had on them and that meant so much when working with her, I instantly felt like she was on our team and that we didn’t have to fight for her understanding or recognition. She didn’t try and fit A&R into a generic box. She worked with them as complete individuals on their own merit.
In that first video consultation we established that Austin was saying the odd word out of context, but wasn’t copying or conversing with you and that Rory wasn’t even doing that, aside from the fact that he cannot speak because of his tracheostomy, he wasn’t interacting, he wasn’t making eye contact, he wasn’t trying to ‘tell you’ anything.
She gave us a set of aims;
To use language spontaneously
To increase confidence when using language
To increase oral-motor skills
To increase the number of times he initiates
To increase the demand and gain eye contact
To learn the art of turn-taking
Some of Rorys aims may need a little explanation as he was starting at a much lower point, and only upon starting this programme did I realise that there is much more to communication than talking.
So….As adults we are very much always the initiator, we walk into a room or approach a child playing and we ask them a question or we narrate their play ‘oooh what are you doing?’ or ‘wow, the farmer is driving the tractor’ and the child is the responder by returning the communication. However, in Rory’s world, when an adult initiates, he doesn’t respond because 1) he cannot physically make sound and he doesn’t know what else to do and so 2) he copes by not acknowledging you at all. Joanne advised that we change the roles and so as the adult, we don’t initiate at all, we let Rory be the initiator and we become the responder which will in turn make him a better message sender, which is THE MOST IMPORTANT skill when becoming a good communicator. This will give Rory the power and he will no longer feel pressure when an adult speaks to him. So the plan was for us not to use language with Rory and instead just play with him, beside him, copying him and as soon as he initiates, by giving us a brick for the tower, or looking at us, or touching us, that’s when we respond. Not necessarily with words.
And so this was where we started.
And from here I made my way through the online learning platform watching videos and listening to podcasts, making my way through powerpoints, gaining wider understanding and a wealth of skills which made me the best therapist for A&R.
The first thing I took part in was a LIVE on Facebook. It was titled ‘HELP! My child doesn’t listen and is in their own world’ it felt very apt with regards to Rory. The key messages that i took from this were;
- The DEMAND / AVOID cycle. We place a demand on Rory, he avoids us. Even something as simple as saying his name to get his attention, it demands a response and he doesn’t know how to give us one, he finds communication difficult and so he avoids it and doesn’t respond.
- Turn-taking is an important technique to use, and it doesn’t need a 3rd object in the first instance. Start with tickling, Rory will laugh or giggle, if you stop, does he respond to initiate your turn? by looking at you, touching you, nudging you, getting your hand to do it again?
- Copy their actions and sounds and their confidence will grow, as their confidence grows add the odd word in.
Then I watched a webinar. There was Speech Pyramid which was so eye opening.
It pointed out that parent / child interaction is the first starting point, and we find this frustrating because we literally interact with A&R all day every day. But Joanne explained that some children, the quality of parent and child interaction is not important, other children need powerful parenting and different techniques.
Paying attention and listening was the next step and nutrition and sleep is a factor in this. Both of which have been a struggle with A&R. Everything was starting to make sense!
Social interaction was the next rung of the ladder, of which they have had very limited experience until this point.
Comprehension was next – the understanding of language. It was easy to see how we hadn’t managed to make it this far.
Expression – using language.
Speech – the finishing line.
When considering that each of these steps needs to be laid in foundation to reach the next one, trachy aside, it is understandable why A&R needed that extra help.
Just the understanding of this alone helped me as a frustrated / desperate parent wanting to help my children and wondering why, when I give them my soul every day, they are still struggling.
I then watched a powerpoint presentation about the Home Environment. We have a playroom which is solely for A&R but the messages I took from this were;
- Less is more.
- The majority of toys that make noise or are reward based (do this and this happens) are not good.
- Plastic figures representative of characters limit play and imagination
- Lots of books can be overwhelming, a few presented in a nice way is best.
- Toy rotation. Store your toys out of sight and put just a few out, changing them round weekly.
Joanne categorises children into groups depending on their communication ability. I will go into this in more detail later but for the sake of the home environment information this is what i took from it;
Explorers – need lots of textures, colours, sensory items. Things like pots, pans, spoons, treasure boxes.
Message Senders – Shape sorters, stackers, open ended and natural toys.
1st Word Users – vehicles, real world play, tough spot tray, characters and puppets.
Phrase / sentence level – dress up, play sets that give tools for imagination.
Joanne spoke about expanding on childrens interests, for example if a child is interested in octonauts, you could look at fish, dinosaurs, plants etc. Think outside of the box.
Next was the first video call. I was nervous about this. There were parents from all around the globe all with children who found speech, communication and language a challenge. We each spoke about our children, their challenges, their progress, our wins, our battles. We supported each other, Joanne coached us, personally and as a group, we left with next steps, new ideas and motivation.
By this point we had already made progress. Austin was much more confident, he was speaking (unclear words) all of the time. 20% of it was recognisable. The first 2 aims he had already smashed. The 3rd aim, we had an appointment to see a paediatrician regarding a possible tongue tie, and we knew to just keep doing what we were doing. Rory was initiating exchanges a lot more, bringing toys to play with, taking us to where he wanted us to go and making choices when shown two objects. We were however struggling with following instructions and active listening. Joanne advised that we use physical and small word repetition and feed language to an action. And so that was our next steps.
At almost a year in, I can honestly say that we have moved mountains.
Austin now speaks in full sentences, asks questions, understands 99% of what is said to him. His speech sounds aren’t 100% clear at the moment and some may not be able to understand some of what he says, but giving that 12 months ago he didn’t even babble, we have to give him chance to clear.
One of the first things that his new teacher said this term was ‘his eye-contact is absolutely fantastic’ and his key-worker talks about how good he is at communicating his needs through physical touch, gesture and eye-contact. He has started to show an interest in others and will play alongside and sometimes with, turn-taking, with familiar children but he is very selective and in a new environment or around unfamiliar people, he will revert back to his comfort zone, playing alone or being repetitive in his activities, but overall his play has developed hugely, he will make-believe and play with small world resources. He does make some sounds and we are almost certain he has said Dad and Yes.
We bought into a lifetime membership for Joanne Jones’ support. She has been invaluable to us.
Just recently, we were re-referred to our local SALT for support with Austins speech sounds. We received the referral and were asked to contact them to make an appointment, which we did straight away. There are no appointments and so we are put on a waiting list for what will most likely be a 15-30 minute clinic appointment.
Joanne Jones is like having my own well qualified, well-experienced Speech and Language Therapist in my pocket and she is there whenever I need her. No waiting lists, no time constraints, just my child at the heart of everything!