In general SLP/SLT paediatric practice, some children whose parents bring them for initial screening and assessment have speech difficulties as their only voice, speech, language or fluency issue, and others have an SSD as their obvious and primary communication disorder perhaps in conjunction with minor language delays. For the majority of them, SLP/SLT management is straightforward from the therapist’s perspective. In these cases, parents will have detected their child’s speech issue and arranged for an assessment, whereupon the clinician assessed the child’s speech and initiated an appropriate intervention regimen, suggested a ‘watchful waiting’ approach, or informed the parent that the child’s speech was within normal limits (WNL) and discussed, reassuringly, normal expectations. Some parents contact the SLP/SLT indicating descriptively that their child has severe, moderate or mild speech issues. Within the ‘mild’ group, parents may report difficulties with one or two sounds: /k/ and /ɡ/; /s/ and /z/; /.ɹ/,/l/, or /θ/ and /ð/. When some of these children actually attend for assessment, it transpires that the parents’ observations were accurate and sufficient, but often this turns out not to be the case. Most seasoned clinicians can probably produce examples of times when, given a parent’s description during the intake process, they were expecting to evaluate a child with minimal speech difficulties, only to find a complex speech picture, on occasion with additional issues.

Similarly, parents may come to the SLP/SLT because, or partly because, they have been encouraged to do so by a nursery or daycare worker (‘carer’) or preschool teacher or school teacher (‘teacher’), who all regularly assume an important role as screeners and referrers to SLP/SLT services (Roulstone, A8). Sometimes parents, suspecting a problem, will have approached the carer or teacher for referral advice (‘I think Jason needs to see a speech therapist; do you agree?’; ‘Is Erica’s speech development on-track for a child of her age?’). On the other hand, sometimes the carer or teacher makes the first move, with the parents apparently unaware of any difficulty (‘Jean-Paul’s speech is difficult to understand; have you considered an assessment by a speech professional?’). Other parents notice a speech problem but actually wait for carers or teachers to spur them into action.

In these situations, carers and teachers can be understandably tentative and overly reassuring, not wanting to alarm parents or appear to be critical of their child-rearing prowess. So, when the parent contacts the SLP/SLT, they may quote the referring person as saying that the child’s pronunciation errors are minor and that the referral is precautionary. They may even report to the SLP/SLT that the referrer mentioned that ‘just a few sessions’ of therapy or home management advice would quickly rectify the problem. Again, this sort of low-key initial presentation can herald the appearance on a caseload of children who prove to have complex intervention needs. The reverse happens, too, with parents reporting severe difficulties that turn out to be mild (though not necessarily ‘mild’ from the parents’ perspective). Further, they may express concerns about speech when issues with language or fluency appear, to the therapist, to be more in need of attention. Such circumstances may require a perceptual shift by parents and needed support while this occurs should be in place (Overby & Bernthal, A16). It may not be a big step for a parent to accept that he or she has been worrying unnecessarily, but it can be a painful adjustment for those who unexpectedly discover that a so-called mild problem is serious, especially when the advice of a trusted carer or teacher conflicts with the SLP’s/SLT’s expert advice. No matter how serious or mild the child’s difficulty seems to be, it is the clinician’s responsibility to determine the presence or absence of speech impairment, to diagnose the nature of it if there is one and to determine if any other types of communication disorder, or ‘special considerations’ are present.

Referral of children with co-occurring speech and language difficulties is a frequent occurrence and language-based approaches appear to be the best possible choice for them (Tyler, 2002; 2010). Even with timely, appropriate intervention, these children may be engaged in treatment for lengthy periods (Ruscello, St. Louis & Mason, 1991; Tyler & Watterson, 1991), so there is often a strong desire on everyone’s part for therapy to start without delay. But there is a period for some children with speech and language impairment when, in the scheme of things, addressing their poor intelligibility warrants low priority. For example, first there are children with severe language issues, including pragmatic language limitations with accompanying, significant behaviour difficulties. For them, it can be exceptionally hard to know how to tame and engage with them, what to treat first and what combination of issues to address. Second, there are the sickest children with cleft palate and co-morbid craniofacial anomalies (Persson & Sjögreen, 2011), who run a physical and emotional marathon – with their families – of heroic medical management, surgical intervention, varying degrees of recovery and hard-won survival before they ever reach us (Kummer, 2008; Sell & Harding-Bell, 2010). Third, there are the internationally adopted infants, toddlers and children who may have travelled to foreign countries from places where SLP/SLT services are unavailable and for whom initial consultation may be late compared with usual industrialised-world standards (Glennen, 2007c; Price, Pollock & Oller, 2006).

All of these groups may contain some children who are behaviourally challenging: actively acting out, depressed or unduly passive, possibly as a consequence of their life experiences, in terms of health and wellbeing, surgery, trauma, malnutrition, dislocation and separation. Their communication challenges may have been exacerbated by insufficient stimulation in orphanages or hospitals, late identification, communicative frustration or shifting linguistic influences. There may be powerful co-morbidities, such as medical fragility and the complex of psychosocial disturbances, sensory issues and seizures, which appear to go hand in hand with some craniofacial anomalies and certain syndromes. The following five questions posed to our experts (Q14, Q15, Q16, Q17 and Q18) concern these special groups of children and their families.

In a thoughtful piece on spoken language, Kent (2006, p. 1) may have summed up the view of many parents about the elite status of speech, when he made this arresting statement:

Speech is but one modality for the expression of language; however, speech has special importance because it is the primary, first-learned modality for hearing language users. Speech is a system in the sense that it consistently and usefully relates the meanings of a language with the sounds by which a language is communicated.

Many parents will wistfully tell SLPs/SLTs something along the lines of, ‘If he could talk clearly, it would solve a lot of problems’. These same parents may be surprised or worried if a clinician appears not to be focused on speech, but more interested in evaluating a range of other aspects of the child’s presentation, such as levels of comprehension in differing conditions. Then, when it comes to intervention, parents of children with speech and language impairment may feel that their genuine concerns about intelligibility are being sidelined, as they see it, while language objectives are given undue precedence.

In A14, Rebecca McCauley talks about the issues involved in assessment, treatment planning and intervention for severely involved children with co-occurring speech and language issues, including those with complex presentations and worrying behaviour, where families in particular, but also at times, trans-disciplinary team members, find it hard to come to grips with customary, evidence-based SLP/SLT intervention priorities and hierarchies.

Dr. Rebecca McCauley is a Professor in the Department of Speech and Hearing Science at the Ohio State University. She is a Board-Recognized Specialist in Child Language and a Fellow of the American Speech–Language–Hearing Association. Her primary interests are in SSD in children, especially severe speech disorders such as childhood apraxia of speech (CAS), and in the nature of interventions, especially those used for children with a variety of communication disorders. Publications related to these topics include six books, five of which are edited volumes, including, in 2010, Interventions for speech sound disorders in children, which she co-edited with A. Lynn Williams and Sharynne McLeod.

There are promising indications in the literature that it is possible to reduce behaviour difficulties by targeting communication skills (Law, Plunkett & the Nuffield Speech and Language Review Group, 2009; Law, Plunkett & Skinner, 2012), but to date studies have focused on children with autism and/or severe speech, language and communication needs (commonly abbreviated SLCN in the United Kingdom) and not discrete populations of children with SSD plus behavioural issues. Clinicians and parents, however, have reported improvements in behaviour as children’s intelligibility increases and this is often attributed to a corresponding reduction in communicative frustration. Conversely, some parents say that behaviour becomes more overtly difficult when a taciturn child comes out of his or her shell and becomes more assertive and ‘verbal’.

For example, my client Harriet who presented at 4;0 with a percentage of consonants correct (PCC) of 35% was a passive, ‘good’ little girl whose mother said compensated for her intelligibility difficulties by being ‘everybody’s helper’ to the point where she earned the family nickname ‘Helpful Harry’. By 5;6 her speech approached normal expectations and she began ‘answering back’ with, ‘No! Why should I?’ and the like when asked to do something. She had also become accustomed to holding the floor at home and when visiting friends and relatives because people close to her dreaded ‘inhibiting’ her further speech progress. If anyone suggested that it might be someone else’s turn to talk, she would react angrily (‘you don’t care what I think!’, ‘You never let me talk’, and so on). Around this time her mother called me, sounding shocked with herself, to say guiltily, ‘I never thought I would tell Harry to “shut up” – but I just did!’ We talked about the factors involved, and over a period of two or three months, Harry’s speech normalised, and her behaviour improved, along with her pragmatics. But it is not always that easy to deal with children’s difficult behaviour.

McCauley (A15) talked about the satisfying, challenging experience of working in a team context. Multidisciplinary, cross-disciplinary and transdisciplinary team members may include social workers, psychologists, family therapists and people from a range of different backgrounds, who have special expertise in counselling. SLPs/SLTs regularly engage in information sharing and counselling, but in their work with the following three groups children with SSD they sometimes encounter troubling behavioural, practical issues and ethical concerns that are beyond their remit as counsellors. The three are:

1. Children who are able to demonstrate co-operation and good rapport with adults in other situations who exhibit ‘difficult’ non-compliant behaviour, including refusal to cooperate in assessment and intervention sessions; or those who show good cooperation in the treatment room coupled with refusal to do homework.
   
2. Children who are unable to demonstrate co-operation and good rapport with adults in speech assessment and intervention settings, and in other situations. These children may present for SLP/SLT assessment and intervention with parents ‘expecting’ the SLP/SLT to manage both the difficult behaviour and the speech disorder. Some conscientious SLPs/SLTs make themselves miserable by trying unsuccessfully to manage behavioural issues with no relevant background in social work, psychology, family therapy, counselling and so on.
   
3. Children who do not have the potential for speech who are referred by their families. Young, inexperienced or newly qualified SLPs/SLTs, especially those in private practice, often have great difficulty talking to parents openly about children who are more suited to AAC – or indeed, may not have the capacity even to benefit from simple, low-tech augmentative devices – and the parents themselves often take the position that if they are prepared to bring the child to therapy and pay for it, then the SLP/SLT is obliged to work with the child.

Who better to ask about working with these ‘difficult’ children and their families than Dr. James Robert Bitter, Professor of Family Counselling at East Tennessee State University in Johnson City, Tennessee, USA. Dr. Bitter is the author of Theory and Practice of Family Therapy and Counseling (Bitter, 2013). Over the course of his career, he has worked with the late pioneer of family therapy, Virginia Satir, as well as the master Adlerian family therapists, Manford Sonstegard and Oscar Christensen. He has written more than 70 articles and 4 books, and he is a founding faculty member of the Adlerian Training Institute in Port St. Lucie, Florida.

Responding to a different question, Megan Overby and John Bernthal offer another perspective on SLPs/SLTs as counsellors that complements the information and reflections provided by James Bitter, who wrote from an Adlerian Family Therapy perspective in A15.

Dr. Megan Overby is an Associate Professor at Duquesne University in Pittsburgh, Pennsylvania, USA. Dr. Overby has authored three publications and frequently presents on children’s SSD. Her current research focuses on aspects of CAS, as well as issues of literacy and counselling in SSD.

Dr. John Bernthal is an ASHA past president and recipient of ASHA Honors. He is also Professor Emeritus, past chair of the Department of Special Education and Communication Disorders and past director of the Barkley Memorial Center at The University of Nebraska-Lincoln in Lincoln, Nebraska, USA. He is co-author with Dr. Nicholas Bankson of five editions of Articulation and Phonological Disorders, and with Bankson and Peter Flipsen, Jr. of the sixth and seventh editions (Bernthal, Bankson & Flipsen, Jr., 2013).

Whereas children with co-occurring speech and language difficulties form a typical component of the generalist child SLP/SLT caseload, children with cleft lip and palate, craniofacial anomalies and velopharyngeal dysfunction (or velopharyngeal insufficiency, VPI) may or may not be frequent referrals. In Australia, Canada, New Zealand, the United Kingdom and the United States, and in most other parts of the industrialised world, the majority of children with cleft palate and craniofacial disorders receive speech and/or language therapy at school or in the community, and not from cleft palate ‘specialists’. The flow of referrals to generalist settings is likely to increase as the most fragile babies increasingly survive infancy. In the United States, there are public laws (e.g., Public Law 107-110, No child left behind, of 2001) requiring school personnel to meet the needs of children with all types of impairments and legislation (Individuals with Disabilities Education Improvement Act [IDEA], 2004) that ensures that, if they desire it, parents are full participants in the process (Gretz, A7).

Fortunately located generalist SLPs/SLTs have opportunities to refer to, or consult with by phone, teleconference, e-mail or in person, more experienced colleagues; collaborate with a craniofacial team; or seek the opinion of a specialist in velopharyngeal dysfunction. But many do not have such resources to call upon and are left to handle the task of reading up on and then managing a wide range of difficulties related to cleft lip, cleft palate, submucous cleft, maxillary retrusion, malocclusion and nasal and nasal cavity abnormalities (Persson & Sjögreen, 2011).

It is generally advised that a child who has had early palate surgery should be reviewed at least annually by an SLP/SLT to monitor speech development. The majority of these children will require ‘some’ through to ‘intense’ SLP/SLT intervention, and about one in five requires additional (secondary) palate surgery to optimise their potential for typical voice quality, resonance (eliminating hypernasality) and speech. In terms of speech output, the therapy itself may target articulation, phonology and voice quality and aim to expand restricted sound repertoires and eliminate or reduce abnormal compensatory articulation patterns. Children with craniofacial anomalies often have concomitant difficulties with hearing, including chronic otitis media and all that it implies (Purdy, Fairgray & Asad, A52) and additional health and medical issues (Persson & Sjögreen, 2011).

Dr. Karen Golding-Kushner tackles Q17, lending her extraordinary expertise to the important questions that immediately arise for practitioners who see youngsters with craniofacial anomalies infrequently. Known for her role as the past Executive Director of the Velo-Cardio-Facial Syndrome Educational Foundation, Inc., Dr. Golding-Kushner is the former Clinical Director of the Center for Craniofacial Disorders at the Montefiore Medical Center, Bronx, NY, and is currently owner of the Golding-Kushner Speech Center, LLC, a private practice in central New Jersey, USA. An ASHA Fellow, she has specialised in craniofacial disorders, cleft palate and velopharyngeal function for the best part of 30 years.