Spina Bifida Over The Lifespan: Challenges and Competencies

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1 Spina Bifida Over The Lifespan: Challenges and Competencies Maureen Dennis 23 rd International Conference for Spina Bifida and Hydrocephalus, Stockholm, June 2012

2 Outline 1. Neurocognitive challenges and competencies in spina bifida a) Beliefs b) Evidence 2. Lifespan Issues a) Infants and preschoolers b) Adults Prospective Memory Numeracy and Mathematics 3. Implications.

3 Beliefs: Motor Children with spina bifida have motor problems. Motor problems are separate from cognitive problems. Motor problems are widespread. SO WE DON T CONSIDER THAT: Early motor training will enhance cognitive development. Motor strengths can bootstrap motor habilitation.

4 Beliefs: Language Children with spina bifida have good language and reading. Use and understand single words. Comprehension is OK. SO WE DON T CONSIDER THAT: Oral comprehension skills must be taught. Written comprehension skills must be taught.

5 Beliefs: Visual Perception Children with spina bifida have visual perception problems. Visual perception problems are severe and global. SO WE DON T CONSIDER THAT: Children with spina bifida can solve visual perception task (e.g., navigation) using strengths (landmarks) rather than weaknesses (spatial coordinates).

6 Beliefs: Math Children with spina bifida have math challenges. Problems are severe and global. SO WE DON T CONSIDER THAT: Children can solve math problems using strengths (exact computations) rather than challenges (number estimation). Some remedial aids may be unhelpful (calculators little use for children with problems in math procedures).

7 D O M A I N G E N E R A L Entrainment Exogenous Predictive TIMING ATTENTION MOVEMENT Synchronicity Endogenous Adaptive Coordinate PERCEPTION Categorical D O M A I N S P E C I F I C Constructed Text Computation LANGUAGE LITERACY NUMERACY Retrieved Word Numeration

8 Evidence: Cognitive Profile Individuals with spina bifida have challenges and competencies in every domain tested. Spina bifida profile is NOT Modality specific Material specific Domain specific A Non-Verbal Learning Disability Profile IS Process Specific; that is, it depends on the kind of process required to solve a problem.

9 Lifespan Issues

10 Early Development Infants with spina bifida have problems in timing, attention, and movement. Deficits at 6 months of age predict later deficits in information processing at 36 months of age. Children with spina bifida are early set on a developmental trajectory that places them at risk for later problem solving, academic skills.

11 Challenges of Young Adulthood and Middle Age

12 Remembering to do things in the future. Event-based (e.g., deliver a message to a person) Time-based (e.g., keep an appointment at a specific hour) Activity-based (e.g., remember to take a pill after dinner)

13 Young adults with spina bifida have more problems than age peers, event- or time-based. Poor prospective memory three times higher in older spina bifida group (over 32 years; 37.50%) than in younger spina bifida group (18-31 years; (12.50%). Prospective memory is important life skill.

14 Numeracy PRESCHOOLERS ý Counting ý Object-based addition and subtraction SCHOOL-AGED CHILDREN þ Numeration þ Rational numbers þ Single digit addition and subtraction accuracy and speed þ Multi-digit addition and multiplication accuracy and speed ý Single digit addition speed and calculation strategies ý Multidigit subtraction ý Division ý Estimating and problem solving ADULTS ý Estimating and problem solving ý Functional numeracy.

15 Numeracy (cont.) Children with spina bifida acquire numeracy, but slowly. At school age, difficulties with estimation, problem solving, speed that continue into adult life. Children with spina bifida who are poor at math problemsolving grow into young adults with poor math problemsolving and difficulties with functional numeracy (making price comparisons in a supermarket, understanding prescriptions, estimating). Cross-sectionally, young adults with spina bifida have limited computation accuracy, computation speed, math problem-solving, and functional numeracy. Poor numeracy is big problem in adult life because it limits personal, social, community independence.

16 Implications

17 Implications: Education 1. Early stimulation to facilitate active motor exploration of environment. 2. Preschool encouragement of manipulative and conceptual understanding of number. 3. Recognize high risk academic areas: Reading comprehension Mathematics 4. Actively teach reading comprehension and inferencing.

18 Implications: Education (cont.) 5. Teach mathematical procedures explicitly (borrowing, carrying, what to do when). 6. Ensure each problem solving step is completed before beginning the next: Relevant information in problem? What does problem ask me to do? How will I do it? What should I do first? 7. Recognize that geometry will be difficult. 8. Teach estimation, life skills mathematics. 9. For individuals 18 years and older, encourage continuing education in life skills mathematics.

19 Implications: Habilitation Better delineation of assets and deficits emerging from experimental studies. Need to exploit new research in motor, cognitive, and academic programs. Landmarks (vs. coordinates) to improve orientation and navigating in local environment and community. Well-developed ability for motor adaptation and learning as component of programs to improve coordination and handwriting. Cross-domain training underexplored area of habilitation. Training in physical rotations improves mental rotation skill.

20 Implications: Tailoring Treatments Basing treatments on incorrect and incomplete understanding of core deficit may be ineffective. Stimulant treatment for ADHD in spina bifida. Attention deficits not the same in the two conditions. Tailoring interventions to assets and deficits may be effective (e.g., for math). Math word problem intervention in spina bifida involved learning and implementing executive strategies led to: improved short- and long-term problem solving better self-efficacy in math.

21 Take-Home Message Early simulation in infants and early intervention in young school-age children can produce a more positive developmental and academic outcome. Education and habilitation should focus on competences as well as challenges in every cognitive and academic domain. It s never too late to improve skills like math to improve independence and quality of life.

22 Grant Support US National Institutes of Health Program Project Grants ( ) P01 HD35946 P01 HD National Cancer Institute of Canada Colleagues (Houston & Toronto) Marcia Barnes Paul Cirino James Drake Kim Edelstein Jack Fletcher David Francis Michael Salman

23 Further Reading: Cognition

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