My son, James, is 27 years old and has a diagnosis of Wolf-Hirschhorn Syndrome and Autism. He has a severe learning disability and is non verbal (with the exception of 3 intelligible words, Mama, car and bye bye).
I have worked with many professionals over the years: teachers, occupational therapists, physiotherapists, psychologists, psychiatrists, dieticians and speech therapists to name a few. I have a great deal of respect for them, they are qualified in their particular field of expertise and many of them have a great deal of experience too. They bring with them that experience and knowledge and are there to help, advise and support us. But it doesn’t mean we have to agree with everything they say.
As parents, many of us, have been negotiating huge challenges with our childrens’ medical conditions, educational needs and challenging behaviours for many years and we have also gained a great deal of knowledge and experience too. I don’t want to come across like one of those parents who think “I know my child best and I’m not prepared to listen to anyone else’s advice.” However, there have been times over the years that my hackles may have been raised by what was probably meant to be a well-meaning comment or advice from one professional or other. There are also times when people can be just down right insensitive or disparaging and I will tell you about one such occasion.
Whilst James is largely non-verbal, he does use other means to communicate for example, gestures, signing, symbols and objects of reference. Communication is an area of his development that I feel there is potential for him to continue to make progress. With this in mind, and as James had been discharged by the NHS speech and language therapy department in 2016, I decided to find a private therapist for an assessment to see if there was more we could be doing to support James. I found someone locally and the therapist and I spoke on the phone to chat about James. This was the first time we had spoken and we hadn’t met and yet there was one the thing that she said to me that stood out. She’d said “if James lived with me (meaning herself) I’d have him talking.”
The Assessment
I’ll admit I can sometimes get on the defensive very quickly, but I let the above comment go. Maybe there was a bit of me that thought ‘well this woman must be a genius, what can she do that no-one else in 26 years has yet tried.’ Having given her some more background information about James we arranged for her to come and meet myself and James at his home to do an assessment. When she visited, she sat with myself and James for a good length of time, I don’t recall exactly how long but I think it was around and hour and a half. We sat doing puzzles with James and whilst chatting she observed James as well as interacting with him herself. We looked at his books too, particularly the social stories I make him online but also lots of other short story and picture books he has. She could see the schedules and daily timetables he has in his flat to support him with understanding his day and routines and I would have hoped too that she was able to see how I interact with James and be able to gauge a little of the kind of input we have provided for him.
After some time, she suggested that perhaps James’ staff could come in and she could share some ideas with us. A couple of James’ care team came, and also his home manager. To be honest what she was suggesting was absolutely nothing that myself and his staff weren’t already doing. In fact, it seemed so obvious to me that it’s second nature and I didn’t need telling to do it. She said we must just constantly be looking at James’ picture books with him and repeating the words. He has lots of books, for example animal books, and we look at them asking him to ‘find the giraffe’ etc and talk about what’s in the pictures. We’ve spent so much time reading his social stories with him pointing out people and familiar places and signing to them. I can honestly say in the 26 years previous to this we have spent hours and hours and hours doing just that. She persisted in telling us how many times a child needs to hear a word before they eventually repeat it and I’m not exaggerating at all when I say that the number of times James has heard these words would have very much surpassed what she was suggesting. She told us how to break down sentences and commands for James, how he was likely to be picking up on one or two key words. I’m not saying it wasn’t all relevant but there was nothing absolutely new here.
I sat through this because whilst I have been doing all these things for many years myself, I thought it wouldn’t hurt for this to be reiterated to James’ staff. During the previous two years his staff have got to know me and James quite well. I’d spent days with them sharing the types of activities James likes to do, how we communicate when we are reading his books and how we use his puzzles etc as an opportunity to share words and do lots of signing. I’m pretty confident that they continue to reinforce these things with James too. On this occasion I found his staff to be a little on the defensive side and reaching for his books on his shelf showing the speech therapist the books I have made him. I think they are aware of the diligence that has been applied in terms of encouraging James’ communication.
At the end of the assessment the speech therapist left saying she would write up and send us a report. James’ staff and I continued to chat. The therapist had repeated in front of them, too, that “if James lived with her, she would have him talking.” His staff told me afterwards how shocked they were that she had said that to me and I told them how she had said it during our first conversation before even meeting myself and James, and without even knowing or understanding the complexities of his condition. I did find the comment somewhat insulting and not only to me but to all the previous speech therapists and teachers who have worked with James over the years. I felt the implication to be that they didn’t do their job properly or advise me correctly. If I wasn’t confident within myself that we had done everything we could to encourage James’ speech then what she said could have made me feel like I have failed my child. I did think about it for some time afterwards but then decided not to dwell on it.
The Final Report
When the report arrived, I read it with interest. It was underwhelming and reached the following conclusions.
- James’ speech and language skills are delayed in line with his diagnosis of Wolf Hirschhorn Syndrome and Autism Spectrum Condition.
- James’ communication skills have the potential to increase beyond his current levels.
- James would benefit from the adults around him using techniques to support his developing communication skills.
- It is recommended that a weekly visual timetable is created for James with his fixed activities so that James can begin and end his day by talking through the events with an adult.
Suggested Strategies to use:
- Use signs alongside spoken words
- Use meaningful words (in context)
- Use choices – offer a choice of two options, repeating each option and allow James to choose.
- Use short and simple sentences.
- Avoid asking open James questions. (what/when/where/how/why/who) as these are too difficult for James and may contribute to low confidence around language skills.
I don’t think I’ll be getting another speech and language assessment any time soon. It’s good, of course, to seek intervention and guidance as needed. Maybe I had a bad experience and another therapist’s approach may have been preferable, but what I would say is to take away from it the advice you feel is relevant and don’t let one person make you feel like you somehow failed.
