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Parents of kids with 'hidden' disability "fighting" for support since diagnosis

One child was so distressed that he talked about killing himself – now he is in a specialist language unit and more confident, his mother said.

Image: Speaking via http://www.shutterstock.com
“It doesn’t look like there’s anything wrong with our kids. They look perfectly normal. It’s a hidden disability” – Nuala O’Callaghan

WHEN NUALA O’Callaghan and Ruth Cullen were both told that their sons had Specific Speech and Language Impairments (SSLI), neither of them knew what the disorder was.

They have each experienced the struggle of getting a diagnosis for their child, and both have had to fight for the services they say their children need.

When Cullen googled SSLI after her son was diagnosed, she found O’Callaghan – as O’Callaghan had set up her own website due to a lack of information available.

Now they want to raise awareness about SSLI, so that other families won’t feel alone.

What is SSLI?

As O’Callaghan’s website explains, SSLI is a disability which is usually diagnosed in early childhood.

Children with SSLI have exceptional difficulty learning and generalising speech, language and communication skills.  The speech and language difficulties in SSLI are specific and persistent [...]
SSLI is different to a speech and language delay.

How do children get diagnosed?

SSLI is diagnosed by a speech and language therapist in conjunction with a psychologist.

Signs:

  • Problems understanding language
  • Problems using language
  • Problems pronouncing sounds

For more info on SSLI, visit www.ssli.ie 

The O’Callaghan family’s story

“I knew there was something wrong, the speech wasn’t coming,” recalled O’Callaghan of how her son was diagnosed.

The family was initially sent down the autism route because children with SSLI have some similar traits to children with autism.

In the meantime, their son started private speech therapy.

While getting an assessment of needs done, they applied for the language unit through their private therapist. Their son was in the unit by the time the assessment revealed that he had SSLI.

He has been out of the language unit for three years, but SSLI is a permanent condition and he continues to need speech and language therapy and occupational therapy.

O’Callaghan said that community speech therapy offers her five 45-minute sessions once a year, so she pays for private therapy.

“Therapists call it so many different things – it can be called a speech disorder, it can be called a language disorder,” she said of SSLI.

We didn’t even understand what a language problem was because we thought he understood what we were saying to him – but it was so much more complicated. [He] just repeats stuff you’re saying to him so you think ‘well he’s repeating so he obviously gets it’.

Her son “created his own little language with the sounds that he had”.

Children with SSLI on the expressive side can’t put sentences in the right order; don’t get grammar like plurals, prepositions, the idea of past, present or future.

The family come up with creative and visual ways of helping their son to understand things.

Children have to have severe speech and/or language difficulties to be referred to a language unit. The units are within mainstream schools but feature small classes and speech and language therapy.

O’Callaghan has tried to set up a new language unit, but was told the HSE could not give a speech and language therapist to this unit.

The Cullen family’s story

Ruth Cullen describes her story as “fight, fight, fight”. Her son was diagnosed late, at the age of eight. He is now 10 and in a language unit.

“From the age of five there were problems,” she explained, adding that as he is her youngest child out of three, she thought that ”he was a little slow and he would catch up”.

He couldn’t read and couldn’t write, and was so distressed that he talked about killing himself.

His resource teacher “did everything she could”, said Cullen. They had to wait for an assessment “until he was the worst in the school”.

Then “a wait and see approach was put to him - as the wait and see approach was left, he was getting worse and worse, his mental health was getting worse and worse”.

Both she and the school had never heard of SSLI. “So we were all in shock.”

Her son travels 25 miles every morning and evening by taxi – paid for by the Department of Education – to his language unit. Ruth said her son has become much more confident now that he is at the unit.

She had initially been told that no further referrals were to be made between the school and the language unit. She went to the school to discuss the situation with the principal, and it was decided her son would be taken into the unit anyway.

Initially, the HSE said he would not be given speech and language therapy within the unit – but if he was in the unit, he was not entitled to community therapy.

After a “long battle” her son now receives speech and language therapy at the language unit. 

Leaving the language unit

The two mothers say that all the language units are run differently.

At O’Callaghan’s son’s unit, the therapist used to teach parents speech therapy techniques.

When children leave the unit – they can be there for up to four years but the typical length of time is one to two years, said O’Callaghan – the mothers say “you’re back to square one”.

“Then you go back on a waiting list for speech therapy,” said Nuala. “We were waiting a year. We had to get a private therapist.”

Because their speech comes on so much with the intensive therapy, they don’t meet the criteria anymore. They’re still being assessed like a child with a delay.

O’Callaghan said that both speech therapists and the Board of Education have all said that changes need to be made “and nobody has done anything”.

Normal life

Cullen said she has “had to put everything on hold” over the last two years. 

“You don’t have a normal life like other people,” said Nuala.

[You can't] do things like other parents do, like go to the park. To go to the park is a big deal, and then it mightn’t work out and you might have to leave.

Changes

Asked what they would like to see changed, O’Callaghan said: “The Board of Education criteria needs to be changed. And more speech and language therapy.”

  • They also want children to be able to stay in the language unit and not have to leave after a specific length of time.
  • They would like the HSE to come on board and enable its speech therapists to provide information to parents through the SSLI website.
  • Other issues include the difficulty getting the psychology assessment for the assessment of needs, and the lack of community occupational therapy sessions available.
  • They feel early intervention needs to be looked at more, and that parents’ concerns need to be listened to.
  • They would like GPs and health nurses to be better educated on SSLI.

“If you don’t get into the [language] unit you should be entitled to resource hours and speech and language therapy in the community sector,” said Nuala.

O’Callaghan has been trying to meet with the Minister for Health to “try and get things changed and try and get more language units”.

She said that parents of children with SSLI are being “dismissed”.

I think because there’s so few kids have it, that… they don’t really care. 

photo (19) A handbook given to parents in the UK. Source: Ruth Cullen

Other parents’ experiences:

Members of the SSLI support group added their concerns:

  • “Lack of speech therapy services as whole. Limited knowledge of SSLI. Adjusting resource hours to higher support needed. Now services are becoming community based, will children be waiting longer?”
  • “The general knowledge about SSLI and  how it affects not only our children’s daily lives but the lives of the family.”
  • “The exclusion from language units of children with SSLI that have ‘any other issues’.”
  • “The joke of being assigned a batch of six speech and language sessions for thirty minutes once a week over six weeks and then nothing for another year.”
  • “Even a speech therapist didn’t inform us Jack had an SSLI and just sent us a report and put on a waiting list”
  • “We didn’t know until the school suggested moving him to a language unit”
  • “In the early years especially parents are fobbed off with ‘ah sure he’ll take off one of these days’ in relation to the speech side of SSLI even by professionals… I had to find out through an internet chatroom what to do”
  • “There is nothing for the child after they leave the [language] unit – they lose resource hours, no help with mental health issues, no help adjusting back to large class again”

Read: 15,776 children waiting for speech and language assessment>

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