Assessing development in children with significant VI BACCH trainees study day

1. Assessing development in children with significant VIBACCH trainees study day May 2016 Ngozi Oluonye & Jenefer Sargent Wolfson Neurodisability Service

2. Why assess development? • Identifying the impact of VI on development in this particular child • To identify areas of relative strength & weakness, and specific problems • Permits exploration of any areas of current concern • Benefits of looking ‘beneath the surface’ • Provides framework for consideration of other concerns eg behaviour • Basis for developmental guidance: practical strategies

3. Why assess development? • What can this child do now? • What does s/he need (help) to learn next? • What factors could be obstructing progress towards next developmental step? • Never simply monitoring for monitoring’s sake • Avoid: ‘Plan: Refer to SpLT/OT/other: can YOU give some practical guidance NOW??

4. (How) do we assess development? • Clinical experience • History • Observation, inc (structured) play based assessment • Screening tools, parent questionnaires • Formal assessment of specific areas of development by SpLT, Psychologist • Standardised assessments (paediatric) • Griffiths, Bayley’s, ?SOGS

5. (How) do we assess development? • Clinical experience • History • Observation, inc (structured) play based assessment • Screening tools, parent questionnaires • Formal assessment of specific areas of development by SpLT, Psychologist • Standardised assessments (paediatric) • Griffiths, Bayley’s

6. Normal development:non-verbal skills What are we looking for in infancy?

7. Normal development: non-verbal skills Cause-effect skills Object permanence Intentionality – goal directed actions Object concepts and functions Object relations Patterns

8. Normal development: language and communication What are we looking for in infancy and early development?

9. Normal development: language and communication Awareness of sound Localisation of sound Significance of sound, language, distinguishing familiar, non-familiar esp voice Production of sound Turn taking Early meaningful words

10. Normal development: social • What are we looking for in infancy and early childhood?

11. Normal development: social • Looking at faces • Smiling, laughing, copying expressions • Gaze following • Triadic gaze • Pointing for need and interest • Early gestures and physical affection • Show and give

12. Developmental outcomes • Wide variation in outcome • Some children keep up with or may exceed sighted peers • Others, transient or persistent delays • Significant proportion have additional learning difficulties/other medical problems (BCVIS study)

13. To assist development in early years and reduce cumulative risks Important to have a developmental approach structured assessment and intervention programme use systematic standard tools A developmental approach to sensory disabilities in early childhood Sonksen PM. Int Rehabil Med. 1985;7(1):27-32. Reynell Zinkin Scales

14. History: Invite descriptions

15. B A B Y • Tell me how you like to play with your baby: what makes your baby smile? • How does your baby respond to sounds? • Does your baby like to be held and cuddled? • What does your baby do with his/her hands? • What sounds can your baby make? • Can your baby grasp objects? What does s/he do when grasping an object? • Does your baby show a different response to familiar and unfamiliar voices? • Can you take vocal turns with your baby? • Does your child reach out to find objects? • Does your child turn towards a sound?

16. Object exploration/knowledge T O D D L E R • What does your child like to play with? • What does your child do with objects? • Can your child hold two objects? • Cause-effect: rattles, press-buttons • Container play – remove, replace • Object recognition – everyday objects – demonstrates use on self, others, doll • Drops/casts when finished, or puts down P R E S C H O O L

17. Response to sounds/words T O D D L E R • Reach for sounds – which direction • Recognises sounds – understands significance – eg liquid in cup, bath running • Recognises familiar action rhymes • Recognises own name • Shows meaningful response to simple action commands – eg clap hands, give me a kiss where’s your nose, (elicit details of contextual clues/sound prompts) • Finds named item(s) on request • Understands concept words eg size, same P R E S C H O O L

18. Vocalisation/expression T O D D L E R • Range of sounds made • Use of sounds – to reinforce actions • Vocal copying • Words: when are these uttered, and for what purpose? • Other means of requesting – actions, handing over an object • What is requested • Communication functions – needs, wants, request for help P R E S C H O O L

19. Social & emotional development; behaviour • What makes your child smile? How do you make him/her smile? • What makes him/her distressed? How to calm? • If s/he is playing with a toy, how does s/he respond if you try to join in? • If s/he is playing with a toy, does s/he try to share the experience with you, and how? • Any behaviours that concern you? • Pretend play actions – dolls, teddies, figurines • Responses to other children • Social greetings

20. History and observation can… • Careful history can be informative and help to identify strengths, weaknesses and areas of parental concern • Encouraging parent to describe their child’s skills may create opportunities for reflection • History and observation alone can provide some basis for practical suggestions for next developmental steps (even if you are not able to complete a full and detailed assessment)

21. To measure development and outcome:Reynell Zinkin Scales (VI) Semi-standardised developmental assessment Designed for infants and preschool children with VI Blind, Partially sighted Sighted norms Age range Blind - up to 5 years Sighted - SM – 3.5 years - VC and Sp/ L – 4 – 4.10 years

22. RZ ‘Norms’: Age progression • Not standardised • Planning a programme of help for the individual rather than comparing to a ‘standard population’ • Approximate age levels to assess relative strengths and weaknesses • to monitor progress • plan advice

24. Sensorimotor understanding delays of up to 24 months Sensorimotor understanding • Exploration of objects • Concepts • object permanence • relationship of objects • Sorting shape and size • Tactile recognition of objects and meaningful use blind < partially sighted < sighted Reynell and Zinkin 1979 (NFER Nelson)

25. SM skills: vision group differences • Item 12: get small object out of simple round box with lid) age equivalent level • Blind 2.2-2.4 y • Partially sighted 1.9-1.11y • Sighted 1.1-1.2 y It is more challenging to learn – child requires a higher developmental level to achieve the skill

26. Response to sound and verbal comprehension • Derive meaning from sound • Orienting to sound • Reaching to sound - any direction • correct direction • Derive meaning from words • Familiar phrases • Object labels • 2 and 3 part instructions • More complex directions including abstract concepts Real life size everyday objects used

27. Response to sound and verbal comprehension blind < partially sighted < sighted Reynell and Zinkin 1979 (NFER Nelson)

28. RSVC: Vision group differences Item 10: Select any familiar object in response to naming age equivalent level Blind 1.11-2.2y Partially sighted 1.9- 1.11y Sighted 12-14m

29. Expressive language • Structure • Sounds • Words • Phrases • Content • Language in relation to real objects • Naming objects • Describe positions and actions

30. Common Deviations in development • Sensitive to touch & therefore resists guidance • Play skills less well developed than language skills • Talks in sentences but not related to object world • Repetitive movements and rigid / gets stuck on activities – but can show good play skills when assessed

31. Risk factors for ‘poor developmental outcome’ • Early social vulnerabilities in young VI child • Significant risk of ASD in older child • Many studies: up to 30% Cass et al 1994, Dale and Sonksen 2002, Parr et al 2010, Tadic et al 2010 Brown et al 2004, Pring and Tadic 2005 • severe plateauing or regression • 1/3 of children with profound VI • first signs between 16- 27m • any VI disorder • higher in boys (4:1) Cass, Sonksen and McConachie 1994 Dev Med Child Neurol Waugh, Chong and Sonksen 1997 Dev Med Child Neurol Dale and Sonksen 2002 Dev Med Child Neurol

32. Also observe…. • Child’s preferred free choice activities • Readiness to move on to new activity • Attention: sustained, flits, follows own interests/adult suggestion • How/does child share interest? • How does child respond when adult ‘joins’?

33. Tips for productive assessment • Make it fun! • Gain the child’s attention – start from what they are doing already – also try for some table time at an appropriate moment • Do not ‘rush’ the child; calm atmosphere • Balance between moving on to next task/following child’s focus of interest: be flexible if child is rigid! • Check out with parent whether responses are reflective of ‘usual’ performance

34. Supporting the development of a child with severe VI • Work closely with QTVI • Use your developmental skills, bearing in mind the ‘differences’ with severe VI • Booklet: Show Me What My Friends Can See • Developmental Journal will be updated and relaunched in the near future