Cork mum fights to get proper supports for her son who has  Verbal Dyspraxia

May 14 is Verbal Dyspraxia Day. MARTINA O’DONOGHUE talks to a Cork mother who is fighting to get her son the proper support she believes he needs
Cork mum fights to get proper supports for her son who has  Verbal Dyspraxia

Julie Sweeney with her son Conor, now aged six and a half, who has Verbal Dyspraxia.

AS any parent of a child with additional needs will know, fighting for services for that child can seem like the biggest battle of all. It’s made all the more difficult when it’s a rare disorder, frequently misunderstood or misdiagnosed.

Verbal Dyspraxia is a motor speech disorder that makes it difficult for a child to speak. International figures state that one to two children in every 1,000 will have it.

Children with Verbal Dyspraxia generally have a good understanding of language; they know what they want to say but have difficulty carrying out the complex sequenced movements necessary for intelligible speech.

Most of us utter words without even thinking about it. It’s something we take for granted.

However, every sound we make requires a specific series of movements of the tongue, lips, jaw and palate. People with Verbal Dypraxia don’t have that natural flow.

It’s a condition Julie Sweeney has had to educate herself on, as her son Conor, now aged six and a half, has been diagnosed with it.

Julie noticed he wasn’t reaching his speech milestones as he approached his second birthday so she took him to his GP and got a referral for Speech and Language Therapy (SLT).

Conor, now aged six and a half, has Verbal Dyspraxia.
Conor, now aged six and a half, has Verbal Dyspraxia.

The GP visit was in the summer but it was November before Conor was seen and after that initial screening it was another seven months before he received any therapy.

“We were told that yes, he definitely did have a speech delay, probably a speech-sound disorder,” says Julie, who lives in Kanturk and commutes to Cork city for work as a teacher

“As time went by, he was diagnosed with Developmental Language Disorder (DLD). But he wasn’t making any progress in Speech and Language Therapy, so that’s when Verbal Dyspraxia raised its head. 

"It’s very hard to get a diagnosis of Verbal Dyspraxia. Quite a lot of people will find that you get a diagnosis stating ‘with traits of Verbal Dyspraxia’. Any speech and Language Therapist will tell you they have to rule everything else out first.”

In order to make any progress with Verbal Dyspraxia, one must go right back to the beginning of speech-sound production and work on motor planning sequencing. However, the HSE isn’t set up for the consistent, lengthy treatment that is needed.

Julie explains: “In the HSE system you get a block of therapy, maybe six sessions, which might last an hour apiece. There are several months in between each block, so we were making absolutely no progress under that system really. We transferred from primary care to Early Intervention. He was with a multi-disciplinary team, getting SLT there, but again we didn’t see much progress.”

Julie Sweeney and her son Conor.
Julie Sweeney and her son Conor.

Conor started school at the age of five, unable to even say his own name. The only word he could say with any intelligibility was ‘mama’. Fortunately, he had a breakthrough in getting adequate therapy at school, but ultimately it won’t last long enough for him to continue his progress.

Julie continues: “He got a place in a local language class at Scoil Gobnait in Mallow. They are classified as special classes by the NCSE (National Council for Special Education) — I think there are around 60-odd of them around the country — and they are brilliant.

“So he entered in Junior Infants and did the normal curriculum like everyone else but would also have an SLT therapist three times per week. She works individually and in groups with the seven children in the class. She liaises really closely with the teachers, so everything the mainstream teacher does is complemented by what the SLT therapist is doing with the children.

“It’s really intensive therapy — and that’s when we saw a change with Conor. That’s what’s recommended with Verbal Dyspraxia: three times a week, shorter sessions but very regular.”

Thanks to this therapy, Conor is now speaking in short sentences, expressing his primary needs, what he wants to eat or drink, for example. However, he still struggles with intelligibility.

While Conor was lucky to get a place in the language class, not every child is so fortunate because so few schools have one and those who do are massively oversubscribed. Only seven children will be accepted — assessed after the first year — and the service is capped at two years before the child is sent to mainstream.

For children like Conor, they have not had the full value of the language class due to Covid-19, as Julie explains: “The speech and language therapist is employed by the HSE and they are assigned to a language class. When Covid hit last year and the schools closed in March, Conor’s SLT therapist was HSE employed, so she got re-directed to Covid contact tracing, but Conor’s place was still ticking on the clock. We had no SLT even though he is in a language class placement. The rug was pulled from under those kids.”

Julie did enquire about an extension into a third year, due to all the time lost, but was unsuccessful due to the classes being so over-subscribed. Conor will leave the intense therapy of his language class in June, to enter a mainstream class of 29, which currently has not even a classroom assistant. He will also return to primary care services, where he previously made little progress.

“Conor is actually classified as having complex needs so he fits the criteria for the new Children’s Disability Network Teams (CDNTs), so he will transfer to their care. 

"I’ve no idea what the waiting lists are like there, how severe his needs will be compared to everyone else. Is he high up the priority list, is he down low? I have zero faith that he’ll get what he needs and very little faith that he’ll get anything at all. ”

It will also be a new environment for Conor to get used to.

“Consistency is important in a child’s life. When we started with a SLT in primary care, it was in Newmarket; then he went to Early Intervention which happened to be in Mallow; he’s now being referred to this disability team operating out of St. Joseph’s in Charleville. It’s a journey that’s out of my way”, says Julie.

Conor, now aged six and a half, has Verbal Dyspraxia.
Conor, now aged six and a half, has Verbal Dyspraxia.

So what would be ideal for Conor at this point?

“In the UK, for example, if you get granted a language class, it’s for a minimum of two years and then if you need to continue after two years you will do; the supports are there for you. If you have made sufficient progress you can transfer back to mainstream while heavily supported. They have language classes all the way up through the education system, so you’d have support into post-primary, whereas here we have no post-primary language class at all, even for those who have the most severe speech and language needs. It’s very difficult, as a parent, to see your child struggling and to know that a little bit of intervention will help.

“There are big ramifications for those with communication difficulties.  A UK study showed that 13% of children with speech and language needs will experience persistent childhood bullying. A child is six times more likely to have reading difficulties, six times more likely to have spelling difficulties, they’re four times more likely to struggle at maths and they are 12 times more likely to have all three of those difficulties.

“If speech and language needs were met at an earlier stage, you would be reducing the likelihood of those difficulties and therefore reducing the need for costly intervention down the line.”

May 14 is Verbal Dyspraxia Awareness Day and Julie is keen to spread the word, knowing what little information is available about the condition, particularly from Irish sources. She and other parents tend to get their information and support from UK-based organisations, as well as from the U.S and Australia, which are seen as fore-runners.

While it is known as Verbal Dyspraxia in the UK and Ireland, it can sometimes be referred to as Developmental Verbal Dyspraxia (DVD), while some countries call it Apraxia and in the U.S it has the name Childhood Apraxia of Speech (CAS). There is no international consensus on terminology, which can make things difficult for parents anxiously surfing the net.

Julie has found a kindred spirit in Dublin-based Evelyn Murphy Byrne, who has been a fantastic advocate, setting up a Facebook support page called Verbal Dyspraxia — Our Missing Voice.

“It’s a wonderful supportive community, full of great advice from parents whose children are at different stages,” says Julie.

Evelyn has another page on Facebook and Instagram called Finding Charlie’s Voice, inspired by her own son’s journey with Verbal Dyspraxia. She organised a virtual run in February, fundraising for the provision of 86 communication boards for primary schools, which has had a phenomenal response. These are colour-coded image based communication boards, which allow a child to point to images in order to express what they want, eg: toilet needs, hunger, etc.

And schools aren’t the only target. Julie was delighted to see one already installed at Leahy’s Farm in Dungourney, which had an immediate positive impact on Conor during his day out there.

“The hope with communication boards is that they become the new standard everywhere. They should be in every playground, every local authority public amenity, or any family attraction. I personally think every childcare provider should have these.

“There are 70,000 children in Ireland with speech and language needs. It should be treated like, for example, wheelchair accessibility. It should be government-funded. 

Evelyn, a mum with no training and no connections, has managed to do this herself, on a voluntary basis out of her own kitchen. If she can do it in a matter of months, why can’t the government do it?”

Highlighting the importance of communication boards will be a key component of this year’s Verbal Dyspraxia Awareness Day.

The statistics are stark. Almost 45,000 children in Ireland are on waiting lists for speech and language assessments and therapy, according to figures released from the HSE earlier this year. More than 14,000 of these children have been waiting for more than 12 months for services.

Characteristics of Verbal Dyspraxia

Children find it hard to produce individual speech sounds and to put sounds together in the right order in words. Often a child will have a limited range of consonant and vowel sounds.

A child will over-use one sound quite a lot, eg: ‘uh’ while pointing to things.

There is an inconsistent production of sounds. For example, if a child wants to say ‘cat’, it could be pronounced ‘tat’ one day and ‘lat’ the next. They are saying the word incorrectly but how they say it incorrectly can vary.

They have difficulty with volume, pitch and quality of speech.

They have unintelligible speech. Even close family members will often struggle to understand.

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