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Our son Charlie is five but he cannot say his name

Verbal dyspraxia: The pathways between Charlie's brain and his mouth have not developed. Here is our story.

Charlie.

How do you begin to describe in words the world of a child living with verbal dyspraxia? Maybe a good place to start is to imagine yourself in that world.

Imagine what it must be like to have all of the thoughts we experience every day and yet find yourself unable to express them. What if you think you are expressing them, but nobody is listening to you; or, even worse, they are listening but are still not doing what you are asking them to do?

Writing this has taken longer than it should have, because I am aware that this may be the only article you will ever read about this condition.

Our son is five and cannot say his own name.

It took months of prompting before he managed to pronounce his sister’s name and only recently has begun to say “Dad”. This is because he has verbal dyspraxia.

Often referred to as developmental verbal dyspraxia, or childhood apraxia of speech (in the United States), verbal dyspraxia is a neurological speech condition. It is rare – or at least so they tell me. Worldwide the prevalence is 1:1,000 children; in Ireland we have no idea what this ratio is.

Motor speech disorder

Children with verbal dyspraxia have difficulty planning the precise movement sequences required for speech – in many cases a child with verbal dyspraxia will think they are speaking, but what we hear is unintelligible. It is not dyspraxia/dcd, or delayed speech, it is not selective mutism, it is not a developmental language disorder, it is not an intellectual disability and, of all things, it is not laziness. It is, however, a motor speech disorder that makes speaking difficult – or, in our son’s case, nearly impossible. Essentially, for reasons that are unclear, the pathways between the brain and the mouth have not developed.

Here is our story.

Charlie was born into a family of talkers and as such the irony of having a child who does not have a voice is not lost on us – a family always encouraged to speak their mind and have an opinion. He is a typical boy – busy, cheeky, full of fun, loves his train sets, Power Rangers, Lego building, sword fighting. You name it he will have tried it. He adores his cousins, and his friends from preschool, all of whom have locked into his secret language. He is protected in this environment, but outside of it is a world that does not understand him.

When he was aged 1½, we began to notice that Charlie’s babbling was not translating into any typical first words such as mama, dada, bye bye, etc. Thankful to have a sister who happened to be a public health nurse at the time, we decided to investigate Charlie’s speech development. He was referred for a speech and language assessment with the Health Service Executive in June, 2015, but we were told it would take six months before he was seen.

It was 12 months later, in June, 2016, when the assessment was completed and we were told he had a severe expressive delay – basically he could not speak. We were told he would need speech and language therapy (Salt) and that there was a waiting period of between six and nine months for this. Charlie was now 2½ years old.

During this period, in September 2015, Charlie came under the care of the early intervention team (EIT), a concept developed to ensure children with complex needs are looked after by a multidisciplinary team in a holistic manner. The harsh reality, however, is that in our area the team was massively under resourced and could not and was not able to cope with the demand for services.

Mum and Dad (Evelyn and Will), and Sophie and Charlie.

Despite the recommendation for Salt from the HSE, and despite being part of an EIT since 2015, Charlie has not directly received any one-to-one Salt from the HSE. The irony of this is that, had he not had complex needs, I believe he would be under the care of the HSE primary care team and would most likely have already received Salt – being part of the EIT was, in my opinion, hindering his access to speech services.

We therefore embarked on private Salt and and when Charlie was 2½ years old we started our first session with Caint, a private practice in Naas. We were lucky to now have a team of very experienced speech therapists who could offer us support, albeit at a financial cost to us each week. We were assigned to the clinical director of the practice and very quickly she suspected that Charlie had verbal dyspraxia. Charlie was now three and this was the first time we had heard the term.

As parents of a child with a rare condition you become focused on what you can learn, yearning for answers, treatment plans, research papers, experts, results – anything to make sure that your child gets the treatment they need. This for us has been the hardest part, because there was no readily accessible information for the Irish population. Communication is a basic human right, after all, and I assumed I could find whatever I needed from either the HSE or the Irish Association for Speech and Language Therapists (IASLT).

However, my source of information came from US sites such as ASHA and Apraxia Kids who have years of research to back up their information, from recognition to diagnosis to treatment and outcome. They are also sufficiently well funded to offer this kind of support, something our local organisations are not.

For us it was simply unacceptable to not have any localised information on the matter and therefore we raised this initially with the IASLT. It agreed there is not enough information, but has committed to include verbal dyspraxia as a topic for its special interest group to investigate in June. Dyspraxia Ireland too has expressed its frustration at having little localised information on the condition and little or no funding to be able to fund a research project in the matter to gather data and allow for protocols to be developed, something it is very passionate about.

Communication journal

For us, as parents of a five-year-old with the condition, it is very real, as we are living with it daily. We are Charlie’s interpreters, decoding as best we can his needs and wants. We rely on a communication journal to tell us how his day has gone in preschool, as he cannot tell us directly.

We are lucky that his preschool is so inclusive and so committed to ensuring that he is kept safe and recognises that communication comes in many forms. However, for many parents in a similar situation this is not the case. Charlie is a master of gestures and facial expressions – I dread to think what place we would be in without these. We can tell for the most part what he needs, mainly because we are around him and have learned his ‘language’ – but for anyone else, he makes lots of sounds but he is 99 per cent unintelligible. We have been on the receiving end of tutting parents on the occasions where the frustrations of not being understood or being able to get your point across is just too much for Charlie.

Our celebrations involve hearing a word unprompted, like when he learned to say a version of his sister’s name Kokie for Sophie. Prior to that we had months of him just calling her “E”. We celebrate all of the fantastic milestones of our friends’ and family’s children with just a tinge of sadness – nativity plays or choral services where he cannot get any words out, starting school a year later than his peers. The despair at not being able to meaningfully chart what the future looks like for Charlie – most parents are focused on the next steps, preschool, primary school, secondary school, maybe college?

Yet, we are stuck focusing on one of the earliest development milestones.

I believe it is unacceptable that the HSE is unable to support these children in their wish to speak and to have a voice. These children do not need expensive surgery, lengthy stays in hospital or expensive medication. What they need is early, frequent and intensive Salt and this is just not often available unless you can go privately. With a recommendation of multiple sessions per week, this is just not feasible for the majority of parents.

Despite numerous requests, the HSE cannot provide us with a protocol for dealing with children like Charlie. They also cannot tell me when Charlie will eventually be seen by the team. I understand that the HSE approach is typically to offer a block of therapy, normally six sessions, before a child is placed at the back of the queue again, or a parent programme to aid in communication. For children with verbal dyspraxia, this cannot replace the input modelling and motor planning queues that are needed to facilitate speech.

Targeted intervention

Charlie will never speak without Salt intervention – he has to be taught how to make the precise movements to speak and this needs to be done by a qualified speech and language therapist. It has been said a child with verbal dyspraxia has to hear and say a single word 1,000 times before it becomes a natural output for them. It is clear in our case the EIT is unable to live up to its name when it comes to delivering specific targeted early intervention for children.

The Department of Education needs to play its part too and ensure that these children are supported in their right to access the curriculum. These children enter school often with limited support. Language units are available, but are difficult to get into and can only be accessed for a maximum of two years before returning to school. Children with verbal dyspraxia don’t get ‘cured’ in two years. At this point we have been unable to get a statement from the Minister for Education on what the protocols are for children presenting with this neurological speech condition.

A parent in a similar situation to us commented that it was not the disability that caused stress, it was the constant fighting for resources and services for our children – the very system that is designed to protect our health is in fact damaging not only our children’s health, but the health of the family of those children too.

We have managed to secure great partnerships with the IASLT, Dyspraxia Ireland, Caint and UCC in an effort to once and for all bring about change in Ireland on this condition. Dr Aileen Wright from the School of Allied Health and Health Research Institute in the University of Limerick is currently initiating a research project to gather best evidence from research in other countries, as well as the views and experiences of stakeholders in Ireland, to inform the potential development of services for children with verbal dyspraxia in Ireland – this is a welcome start.

And so, until Charlie is able to use his own voice, we will remain his.