My name is Ruth Cullen. I have set up a Facebook page in response to the lack of support given when my son was diagnosed with SSLI. I was handed a small information leaflet which said that parents may feel distressed and need support on hearing of their child’s Impairment but there was no support! I Googled SSLI on the internet to look for help and came across a website called ssli.ie that another parent in a similar situation to me, frustrated with lack of information set up as a place for providing information for parents.
I started the SSLI parents support group in January 2013. It is a closed group for privacy and so far there are 63 members from all over Ireland and some parents have recently come on board looking for support from the UK. I am putting together this report as a voice for parents and professionals in the group and have protected identities by changing names only, the rest are concerns and hopes for change in the future.
SSLI is such a complex disability that can be mistaken for a delay or that the child is ‘grand’ and will ‘catch up’. It is much more complex than this. The Impairment gives children great confusion and difficulty in learning language. Problems occur in expressive and receptive language and if this is not caught in early years the difficulties can be exasperated.
My own experience of intervention came when I was ringing different services trying to find out ‘what was wrong with my son’, driving 30 miles to a centre paying for private assessments and still no diagnosis as the ‘wait and see’ approach was implemented. My son was finally assessed at 8 years of age by a NEPS psychologist and speech and language therapist when his needs became so bad he was in the bottom 2 in the whole school! At this stage he was emotionally distressed and knew himself that he was different to the other children in class performance. This to me is not acceptable and I wonder how many other children are falling through the loop holes.
What parents are reporting to observe and indeed the challenges I face with my own son go much deeper than learning alone. Emotional, behavioural and social challenges arise with the frustration of not being understood or able to communicate properly. When these needs are brought to mental health services a ‘wait and see approach’ and ‘this is a learning issue’ are common responses and the parent is left trying to cope with an emotionally distressed child.
I asked the parents in the group what they would like to happen and what concerns they have. Below are all the comments made and each and every opinion is as valuable as the other.
“Definitely raise awareness of SSLI and all the other things that in hand in hand with it, ie. the sensory issues and how hard it is for some kids with their confidence and self esteem also about how some kids need strict structure and routine. Don’t think people fully understand it at all”.
“Yep defo awareness!!! Resource teachers, schools, childcare services or GPs should at the very least receive a memo that SSLI exists!!”
‘’I would like to know when a parent is told that there child has ssli and has been lucky enough to be granted a place in a language unit for 2 yrs and does quite well… WHY they punish the child going back to mainstream school by NOT granting resource hrs because they did well!!!!!! It is a LIFELONG …. I also wish that there was some form of card like the autism card that helps with queues etc as the meltdowns about having to wait more then 2 mins is just not worth it!!!!…… Best of luck and ur great to be going wish I could’’
‘’I think S&L therapist should be out right honest and explain what their results entail. When you are told your child would benefit from an S&L unit it should be overwhelming and not a shock. We had no warning sign when our child was attending an SLT from the HSE that this will be going down this route. Also parents should be offered support for kids with SLLI as its the frustrations, outbursts and possibly anger management that needs to be supported. And many kids that experience this can result in having ADHD, accordingly its linked? SSLI should be made more aware of the meaning to medical officers, GP and the HSE instead of getting a blank face of what is that?’’
‘’ Thanks for the feedback, that must be very frustrating not getting help after the full support of the unit. Personally I feel children should remain in the units with support. I don’t understand 2 years help then on your merry way! It would be interesting to see why this happens and the reasoning behind it and your right, it’s lifelong but not treated that way ! My son goes nuts in queues too so I understand the frustration of that. ‘’
‘’Also they should have more schools that cater for language units? Don’t get me wrong, I’m grateful for my son being in one but at first it was overwhelming for my son at the time (senior infants) getting a bus by himself, attending breakfast club and getting home till late took its toll on him. I just think more schools should jump on board. If the S&L waiting list is that long and getting your child into a language unit is like pot luck as I was told, how many kids are missing out? My son shares a senior language unit and he is 7 and the oldest is ten. How does that work? Surely each child should be in a class around the same age. It just shows how much the country in out dated’’.
‘’ The HSE call it a language disorder. That is why it’s not know, there are so many names put to it. People just really need to be educated about it BIG TIME. And I hate when they give you the ‘he/she will catch up speech’, no they won’t. It’s lifelong what part of that don’t people understand and I agree more support for the parents. It’s hard when you’re told things like today, my son got a score of 1 for his expressive language and the scores should be between 7 and 13 for his age, so he is well below average and being told that when it comes to exams he is going to find it hard and will struggle makes me concerned for his future in school and he is only 5”.
‘’When Mary attended the unit she had 2 x in junior infants. 2 x senior infants. 1 x in first class and herself and another lad in 2nd class!!!! Which is mental!!! But I was still delighted she went… But I REALLY hate to say this, but if Mary didn’t get the diagnosis of EBD (Emotional Behavioural Disturbance) she would have been left with NOTHING going back to mainstream. So I know it’s wrong to say it but I was relieved she got it as I knew it meant she would get resources… NOW that is sooooooo wrong on very level…’’
‘’ I feel the very same as you, my son lost his hours too as he did so well but feel he may regress as not getting same attention as the unit. It’s so worrying.’’
‘’ I feel we are been punished for trying to do right by our child… Why do they think it’s ok to give your child this help for 2 yrs including transport etc and then NOTHING’’
‘’Also would like to know about books for parents explaining it from the perspective of an older child not from baby stage up to school age!!! There just NO info for us’’
‘’ I think he is lost in the big class again.keeps forgetting stuff etc’’
‘’ As a teacher in a Speech and Language Class I would agree there should be more of them as there are always more applications than places available. I also feel, as in other many other countries, that the Department of Education should employ the Speech therapists that work in these classes’’
‘’ I guess my main concern is the lack of awareness amongst the professionals and also teachers and principals in schools, alot of them even slt’s havent a clue what SSLI is so if they dont know what hope do we as parents have!!!’’
‘’On Tuesday we agreed upon his IEP but I find myself a bit squached between differentiating opinions or power struggles or bad communication between school and HSE or Speech therapist in general. ‘’
As you can see from the statements there seems to be very mixed messages and confusion between professionals and also lack of knowledge in mainstream schools of SSLI. This has to change as the child’s needs should be central to this rather than differences of opinion or leaving the child to see if they catch up. SSLI is not a delay it is a lifelong disability that needs lifelong interventions to support the person to develop and live independently.
Services must come together and form a cohesive approach rather than lack of communication and form a clear pathway of treatment for children who present with SSLI and recognise that although it is speech and language impairment that with impaired communication comes many forms of emotional and social challenges which cannot be ignored.