Scholarly Article Supports That There Is A Point To Early Intervention..Please Share..

26 Sep

For anyone who interacts with others who are questioning the point to early intervention and the effects that it can have on very young children, feel free to pass this article on.  It makes for a very good educational tool…. Thank you.

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Challenges and limitations in early intervention

  1. MIJNA HADDERS-ALGRA

Article first published online: 21 SEP 2011

DOI: 10.1111/j.1469-8749.2011.04064.x

Issue

Developmental Medicine & Child Neurology

Developmental Medicine & Child Neurology

Special Issue: Impact of Intervention: can we affect typical and atypical development of the human brain? Outcome papers from an International Workshop held 22-24 April 2010 in Groningen, the Netherlands

Volume 53, Issue Supplement s4, pages 52–55, September 2011

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How to CiteAuthor InformationPublication History

How to Cite

HADDERS-ALGRA, M. (2011), Challenges and limitations in early intervention. Developmental Medicine & Child Neurology, 53: 52–55. doi: 10.1111/j.1469-8749.2011.04064.x

Author Information

  1. Department of Pediatrics, Developmental Neurology, University Medical Center Groningen, Groningen, the Netherlands.

*Correspondence: Dr Mijna Hadders-Algra, University Medical Center Groningen, Developmental Neurology, Hanzeplein 1, 9713 GZ Groningen, the Netherlands. E-mail: m.hadders-algra@med.umcg.nl

Publication History

  1. Issue published online: 21 SEP 2011
  2. Article first published online: 21 SEP 2011
  3. PUBLICATION DATA Accepted for publication 28th February 2011.

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Jump to…Top of pageAbstractParent–Infant InteractionType and Timing of the Lesion of the Developing BrainAge at Which the Intervention is AppliedContents of Early InterventionConclusionAcknowledgementsReferences

Abstract

  1. Top of page
  2. Abstract
  3. Parent–Infant Interaction
  4. Type and Timing of the Lesion of the Developing Brain
  5. Age at Which the Intervention is Applied
  6. Contents of Early Intervention
  7. Conclusion
  8. Acknowledgements
  9. References

Research over the past three decades has shown that early intervention in infants biologically at risk of developmental disorders, irrespective of the presence of a brain lesion, is associated with improved cognitive development in early childhood without affecting motor development. However, at present it is unknown whether early intervention is also able to improve developmental outcome in infants with a serious lesion of the brain. This paper discusses factors that might play a role in the effect of early intervention. The following picture emerged from the limited evidence available: (1) coaching of parents seems an effective means of intervention; (2) our understanding of the plasticity of the developing human brain is currently too limited to allow a direct practical implementation in early intervention; (3) intervention before term age should primarily focus on stress reduction, intervention after term age on stimulation of infant development; and (4) our knowledge of the best ways to stimulate infant development is scant. Nevertheless, preliminary data suggest that offering the infant ample opportunities to explore by self-produced motor activities the borders of their own abilities might be a good strategy for promoting developmental outcome, including functional mobility.

Infants might be at risk of developmental disorders for a variety of reasons. The risk might consist of social or biological disadvantage or a combination of both.1 Well-known examples of biological disadvantage are prematurity or low birthweight, whether accompanied by a serious lesion of the brain or not.2 The usual care of infants at risk of developmental disorders includes early intervention. This comprises ‘the multidisciplinary services provided to children from birth to 5 years of age to promote child health and well-being, enhance emerging competencies, minimize developmental delays, remediate existing or emerging disabilities, prevent functional deterioration and promote adaptive parenting and overall family functioning’.1 Today a wide variety of early intervention programmes exists.3–6 The programmes have been shown to be effective in promoting developmental outcome, in particular cognitive outcome, in infants socially at risk of disadvantaged development.7 Gradually, evidence is also emerging of the effect of early intervention in infants biologically at risk of developmental disorders, i.e. those with prenatal, perinatal, and neonatal complications. The effect of early intervention in these groups has been studied most often in preterm infants. Recent systematic reviews, including meta-analyses, on the effect of early intervention in infants born preterm indicate that early intervention is associated with improved cognitive development during infancy and preschool age.5,6 Evidence that the effect persists into school age or later is lacking. In addition, the reviews indicate that early intervention in general has little effect on motor development. Interestingly, the beneficial effect of early intervention on cognitive development appears to be relatively independent of the specifics of the intervention programme.5 However, it should be realized that few studies investigated relationships between the contents of the intervention programmes and developmental outcome.

The aim of the present paper is to discuss factors that might play a role in the effect of early intervention in infants biologically at risk of developmental disorders. The following issues will be addressed: (1) the role of parent–infant interaction; (2) the type and timing of an early lesion of the brain; (3) the age at which the intervention is applied; and (4) the contents of intervention.

Jump to…Top of pageAbstractParent–Infant InteractionType and Timing of the Lesion of the Developing BrainAge at Which the Intervention is AppliedContents of Early InterventionConclusionAcknowledgementsReferences

Parent–Infant Interaction

  1. Top of page
  2. Abstract
  3. Parent–Infant Interaction
  4. Type and Timing of the Lesion of the Developing Brain
  5. Age at Which the Intervention is Applied
  6. Contents of Early Intervention
  7. Conclusion
  8. Acknowledgements
  9. References

Parents are the key persons in a child’s life. Awareness of the impact of parents, caregivers, and the family on child development has resulted in the recognition of the importance of family-centred intervention services in health care for infants with or at risk of neurodisability.8,9 However, the role of the family, parents, and caregivers in the various forms of family-centred service varies substantially. The interventions differ for instance in the extent to which family autonomy is respected, in the degree of parental instruction or parental coaching, and in the attention paid to parent–infant interaction.10 The effect of most components of family-centred service on the child’s developmental outcome is unknown. An exception to this rule is the effect of parent–infant interaction on developmental outcome. Various studies have indicated that greater dyadic tuning between parent and infant, and more responsive, positive, warm, and sensitive parenting, is associated with better developmental outcome at preschool and school age.11,12 However, it is important to realize that association does not automatically imply causation. The association between parental behaviour during interaction with the infant and developmental outcome might in part be mediated by the characteristics of the infant. For instance, infants with an early lesion of the brain might show more stereotyped and less adaptive behaviour than typically developing infants.13 This, in turn, might induce less positive parental behaviour and impaired dyadic interaction between parent and infant. Nevertheless, the recent randomized controlled study of Koldewijn et al.14 suggests that parental behaviour also has an independent effect on child outcome. The study indicated that the preterm infants who had received intervention that paid specific attention to the infants’ self-regulation and sensitive parent–infant interactions had a significantly better motor outcome at the age of 2 years than the comparison group of infants. In contrast to most other studies, the intervention was not associated with improved cognitive outcome.

In the Groningen Vroege Interventie Project (VIP project), a study on intervention from 3 to 6 months corrected age in infants at high biological risk of developmental disorders, we recently evaluated the contribution of specific elements of intervention to developmental outcome. The results suggested in particular that coaching of parents was associated with improved developmental outcome at the age of 18 months.15,16 Coaching is defined as professional guidance aiming to empower caregivers so that they can make their own decisions during daily care activities. This implies that coaching differs largely from instruction.17

Jump to…Top of pageAbstractParent–Infant InteractionType and Timing of the Lesion of the Developing BrainAge at Which the Intervention is AppliedContents of Early InterventionConclusionAcknowledgementsReferences

Type and Timing of the Lesion of the Developing Brain

  1. Top of page
  2. Abstract
  3. Parent–Infant Interaction
  4. Type and Timing of the Lesion of the Developing Brain
  5. Age at Which the Intervention is Applied
  6. Contents of Early Intervention
  7. Conclusion
  8. Acknowledgements
  9. References

Over the years, animal data have demonstrated that the effect of a lesion of the developing brain depends on the point in time at which the lesion occurs. Originally, it was thought that ‘the younger the age at insult, the better the outcome’ (the so-called Kennard-principle).18 However, gradually it became clear that the consequences of a lesion of the developing brain depend on developmental stage at insult, the site and the size of the lesion, animal species, exposure to chemical substances before and after the insult, and environmentally induced experience. It transpired that each stage, each neural system, and each species has specific vulnerabilities and resources of resilience to cope with the effects of an early lesion.19

Our knowledge on how this information translates to the human situation is limited. Recent advances in brain imaging and neurophysiological techniques have furnished some insights. It became clear that insults occurring during (the period equivalent to) the early third trimester of pregnancy usually affect the periventricular areas, including the periventricular white matter; those occurring near term more often affect the cortical grey matter.20 Staudt21 demonstrated that the organizational processes in response to an early lesion not only vary with the timing of the lesion but also with the neural system. For instance, in case of a unilateral lesion of the brain, the chance of motor recovery is higher for early third-trimester lesions than for lesions occurring near term. This is because, at early age, recovery might be mediated by persisting ipsilateral corticospinal projections that compensate for the lost ones on the side of the lesion. For the sensory systems the effect of an early third-trimester lesion is different. At that age the ascending thalamo-cortical somatosensory projections have not yet reached the cortex, allowing the system to use local deviations that bypass the lesion in order to reach the cortex.

Little is known, however, about the way in which we might facilitate the processes that mediate functional recovery in the developing human brain. Our knowledge is most advanced in unilateral spastic cerebral palsy (CP). Animal data pointed to the importance of balanced activity in both hemispheres and to the consequences of lesion-induced unbalanced activity during early development.22 The animal data, recent findings on the pathophysiology,23 and the effect of intervention in unilateral spastic CP (constraint-induced movement therapy or stimulation of bimanual activity)24 suggest that bilateral motor activity at early age is an important factor in functional recovery after an unilateral lesion of the brain.

Jump to…Top of pageAbstractParent–Infant InteractionType and Timing of the Lesion of the Developing BrainAge at Which the Intervention is AppliedContents of Early InterventionConclusionAcknowledgementsReferences

Age at Which the Intervention is Applied

  1. Top of page
  2. Abstract
  3. Parent–Infant Interaction
  4. Type and Timing of the Lesion of the Developing Brain
  5. Age at Which the Intervention is Applied
  6. Contents of Early Intervention
  7. Conclusion
  8. Acknowledgements
  9. References

The human nervous system changes and develops throughout life.25 But the way in which it changes varies with age. During prenatal life, focus is on neuron and glial cell proliferation, cell migration, neural apoptosis, and axon and dendrite formation. During infancy, dendrite formation, synapse production, and myelination are most prominent. In later childhood, the major developmental processes consist of synaptic reorganization and myelination. This implies that the nervous system has age-specific forms of plasticity. For specific lesions and functions this plasticity is associated with critical windows during which intervention might have an effect that no longer might be obtained once the window is past. Critical periods have been demonstrated in the treatment of amblyopia and for the effect of cochlear implants on cortical processing of auditory information and speech development.26,27 Interestingly, the critical periods of the two sensory functions share the following characteristics: (1) the earlier the intervention is started, the larger is the functional effect; (2) the critical period of substantial functional effect ends around the age of 7 years; and (3) also beyond the critical period, intervention might still induce functional changes.26,27 It has been hypothesized that in the development of unilateral spastic CP a similar critical period might exist,23 but further research is required to corroborate this suggestion. Extrapolation of some animal data that implied recovery of function after an early lesion of the brain is best during the period of dendritic outgrowth and formation, suggests that the period ranging from the third trimester of pregnancy to the postnatal age of about 1.5 years offers the best opportunities for effective intervention.25,28

Before term age the effect of intervention might also be affected by stress. The stress is related to the difficulties of the preterm infant to adapt to the extrauterine situation owing to immaturity of vital physiological functions.29 The stress might enhance the capacity to cope with extrauterine life and thus promote survival. But stress before term age might also induce ‘developmental programming’.30 Animal data indicate that stress during early life gives rise to changes in serotonergic and noradrenergic activity in the cerebral cortex and alterations in dopaminergic activity in the striatum and prefrontal cortex.31–33 These changes have been associated with impaired development of the maps of body representation in the primary somatosensory cortex, inappropriately developed ocular dominance columns in the visual cortex, and mild motor problems.13 Gradually, evidence is accumulating that stress during early human ontogeny is also associated with long-term modifications of neurobehavioural development.32,34 In addition, animal research has indicated that the hormonal changes induced by stress might modify the effect of a lesion of the developing brain and the effect of early intervention.19 The sensitivity of the young nervous system to stress-related factors implies that reduction of stress is an important goal of early intervention before term age.

Jump to…Top of pageAbstractParent–Infant InteractionType and Timing of the Lesion of the Developing BrainAge at Which the Intervention is AppliedContents of Early InterventionConclusionAcknowledgementsReferences

Contents of Early Intervention

  1. Top of page
  2. Abstract
  3. Parent–Infant Interaction
  4. Type and Timing of the Lesion of the Developing Brain
  5. Age at Which the Intervention is Applied
  6. Contents of Early Intervention
  7. Conclusion
  8. Acknowledgements
  9. References

Recent reviews3–6 have brought the limitations of our understanding on the effectiveness of specific components of early intervention clearly to light. Presumably the multifactorial composition of early intervention in children with or at risk of neurodisability is responsible for the lack of understanding. It is acknowledged that the effect of intervention might not only depend on the nature of the lesion of the brain and on family conditions, but also on the interaction of the intervention with the various personal and environmental factors.35

Still, the body of knowledge on early intervention steadily grows. It suggests that the nature of the most effective intervention before term differs from that applied after term age.3,4 Before term age, stress reduction appears to be essential. The Newborn Individualized Developmental Care and Assessment Program8 is a well-known example of a standardized intervention programme in which stress reduction is a major goal. This programme has been associated with a beneficial effect on developmental outcome in infancy, but the effects on outcome beyond infancy are controversial.3,4,36,37 The study of Guzzetta et al.38,39 suggests that, in addition to stress reduction, the application of infant massage during the preterm period might have a beneficial effect on development. The positive effect was found in low-risk infants. Further studies are required to investigate whether massage will have a similar positive effect on development in infants with a lesion of the brain. Animal data suggest that this might be the case.19

Little is known about the effectiveness of specific components of intervention applied after term age. A large diversity of general developmental programmes has been associated with better developmental outcome, in particular with improved cognition. The interventions presumably consist of a mix of effective, neutral, and counterproductive elements. Future research should aim at unravelling these components. The Groningen VIP project was a first step in this direction. In the VIP project the contents of intervention were systematically quantified and correlated to developmental outcome immediately after the end of intervention (at the corrected age of 6mo) and 1 year later. The data revealed (1) coaching of parents and (2) challenging the infant with a wide variety of self-produced motor activities were associated with better functional outcome at 18 months, in particular with improved functional mobility, (3) the proportion of time of the intervention sessions that was spent with handling techniques (hands-on) showed a negative association with functional outcome at 18 months, and (4) application of sensory and passive experiences was associated with a positive effect on cognition immediately after the end of the intervention, but these components of intervention showed a negative association with outcome at 18 months.15,16 The finding that self-produced activity in a variety of conditions is associated with better outcome is in line with the developmental principles of the neuronal group selection theory: the afferent information associated with self-produced trial-and-error activity guides the process of selection of the best strategy for each situation.13 The data suggest that coaching of parents to solve their own problems and to integrate motor activities in which the infant is allowed to explore the borders of its own abilities into daily routines might be a simple and effective means of promoting infant development.

Jump to…Top of pageAbstractParent–Infant InteractionType and Timing of the Lesion of the Developing BrainAge at Which the Intervention is AppliedContents of Early InterventionConclusionAcknowledgementsReferences

Conclusion

  1. Top of page
  2. Abstract
  3. Parent–Infant Interaction
  4. Type and Timing of the Lesion of the Developing Brain
  5. Age at Which the Intervention is Applied
  6. Contents of Early Intervention
  7. Conclusion
  8. Acknowledgements
  9. References

Research over the past three decades has shown that early intervention in infants biologically at risk of developmental disorders is associated with improved cognitive development in early childhood. The effects have been shown for groups of infants with varying degrees of biological risk of whom only a minority had a serious lesion of the brain. This means that it is currently unknown whether early intervention is able to improve outcome in infants with a serious lesion of the brain. The data of the VIP project suggest, however, that this might be possible: the previously mentioned associations between components of intervention, such as parental coaching and promotion of the exploration of a variety of self-produced motor activities, and functional outcome were found in particular in the small subgroup of children who developed CP.15,16 Additional studies on the effect of early intervention in infants with a lesion of the brain are urgently needed. These studies also should pay attention to the contents of intervention. The LEARN 2 MOVE 0 to 2 years project is a step in the desired direction.40

Jump to…Top of pageAbstractParent–Infant InteractionType and Timing of the Lesion of the Developing BrainAge at Which the Intervention is AppliedContents of Early InterventionConclusionAcknowledgementsReferences

Acknowledgements

  1. Top of page
  2. Abstract
  3. Parent–Infant Interaction
  4. Type and Timing of the Lesion of the Developing Brain
  5. Age at Which the Intervention is Applied
  6. Contents of Early Intervention
  7. Conclusion
  8. Acknowledgements
  9. References

I gratefully acknowledge Tineke Dirks, Ilse Ebbers-Dekkers, Elisa Hamer, and Tjitske Hielkema, for comments on a previous draft of the manuscript. The early intervention work of Mijna Hadders-Algra is financially supported by the Johanna KinderFonds, Stichting Fonds de Gavere, the Cornelia Stichting, ZonMW, Stichting Rotterdams Kinderrevalidatie Fonds Adriaanstichting, Phelpsstichting, Revalidatiefonds, Revalidatie Nederland, the Nederlandse Vereniging van Revalidatieartsen, and the Graduate School for Behavioural and Cognitive Neurosciences.

Jump to…Top of pageAbstractParent–Infant InteractionType and Timing of the Lesion of the Developing BrainAge at Which the Intervention is AppliedContents of Early InterventionConclusionAcknowledgementsReferences

References

  1. Top of page
  2. Abstract
  3. Parent–Infant Interaction
  4. Type and Timing of the Lesion of the Developing Brain
  5. Age at Which the Intervention is Applied
  6. Contents of Early Intervention
  7. Conclusion
  8. Acknowledgements
  9. References
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    Allen MC. Neurodevelopmental outcomes of preterm infants. Curr Opin Neurol 2008; 21: 123–8.

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    Blauw-Hospers CH, Hadders-Algra M. A systematic review on the effects of early intervention on motor development. Dev Med Child Neurol 2005; 47: 421–32.

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    Blauw-Hospers CH, De Graaf-Peters VB, Dirks T, Bos AF, Hadders-Algra M. Does early intervention in infants at high risk for a developmental motor disorder improve motor and cognitive development? Neurosci Biobehav Rev 2007; 31: 1201–12.

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    Spittle AJ, Orton J, Doyle LW, Boyd R. Early developmental intervention programs post hospital discharge to prevent motor and cognitive impairments in preterm infants. Cochrane Database Syst Rev 2007; 18: CD005495.
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    Orton J, Spittle A, Doyle L, Anderson P, Boyd R. Do early intervention programmes improve cognitive and motor outcomes for preterm infants after discharge? A systematic review Dev Med Child Neurol 2009; 51: 851–9.

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    Halpern R. Early intervention in low-income children and families. In: Shonkoff JP, Meisels SJ, editors. Handbook of Early Childhood Intervention, 2nd edn. Cambridge, UK: Cambridge University Press, 2000, p 361–86.

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    McAnulty G, Duffy FH, Butler S, et al. Individualized developmental care for a large sample of very preterm infants: health, neurobehaviour and neurophysiology. Acta Paediatr 2009; 98: 1920–6.

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    Rosenbaum P. Family and quality of life: key elements in intervention in children with cerebral palsy. Dev Med Child Neurol 2011; 53 (Suppl. 4): 68–70.
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    Dirks T, Hadders-Algra M. The role of the family in intervention of infants at high risk for cerebral palsy: a systematic analysis. Dev Med Child Neurol 2011; 53 (Suppl. 4): 62–67.
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    Smith KE, Landry SH, Swank PR. The role of early maternal responsiveness in supporting school-aged cognitive development for children who vary in birth status. Pediatrics 2006; 117: 1608–17.

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    Treyvaud K, Anderson VA, Howard K, et al. Parenting behavior is associated with the early neurobehavioral development of very preterm children. Pediatrics 2009; 123: 555–61.

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    Hadders-Algra M. Variation and variability: keywords in human motor development. Phys Ther 2010; 90: 1823–37.

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    Koldewijn K, van Wassenaer A, Wolf MJ, et al. A neurobehavioral intervention and assessment program in very low birth weight infants: outcome at 24 months. J Pediatr 2010; 156: 359–65.

  • 15
    Hielkema T, Blauw-Hospers CH, Dirks T, Drijver-Messelink M, Bos AF, Hadders-Algra M. Does physiotherapeutic intervention affect motor outcome in high-risk infants? An approach combining a randomized controlled trial and process evaluation. Dev Med Child Neurol 2011; 53: e8–15.

  • 16
    Blauw-Hospers CH, Dirks T, Hulshof LJ, Bos AF, Hadders-Algra M. Pediatric physical therapy in infancy: from nightmare to dream? A two arm randomized trial. Phys Ther 2011. In press.

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    Dirks T, Blauw-Hospers C, Hulshof H, Hadders-Algra M. Differences between the family-centered program ‘Coping and caring for infants with special needs’ and infant treatment based on principles of neurodevelopmental treatment. Phys Ther 2011. In press.

  • 18
    Kennard MA. Reactions of monkeys of various ages to partial and complete decortication. J Neuropathol Exp Neurol 1944; 3: 289–310.

  • 19
    Kolb B, Mychasiuk R, Williams P, Gibb R. Brain plasticity and recovery from early cortical injury. Dev Med Child Neurol 2011; 53 (Suppl. 4): 2–3.
  • 20
    Krägeloh-Mann I, Horber V. The role of magnetic resonance imaging in elucidating the pathogenesis of cerebral palsy: a systematic review. Dev Med Child Neurol 2007; 49: 144–51.

  • 21
    Staudt M. Reorganization after pre- and perinatal brain lesions. J Anat 2010; 217: 469–74.

  • 22
    Martin JH, Chakrabarty S, Friel KM. Harnessing activity-dependent plasticity to repair the damaged corticospinal tract in an animal model of cerebral palsy. Dev Med Child Neurol 2011; 53 (Suppl. 4): 9–13.
  • 23
    Eyre JA, Smith M, Dabydeen L, et al. Is hemiplegic cerebral palsy equivalent to amblyopia of the corticospinal system? Ann Neurol 2007; 62: 493–503.

  • 24
    Gordon AM. To constrain or not to constrain, and other stories of intensive upper extremity training for children with unilateral cerebral palsy. Dev Med Child Neurol 2011; 53 (Suppl. 4): 56–61.
  • 25
    De Graaf-Peters VB, Hadders-Algra M. Ontogeny of the human central nervous system: what is happening when? Early Hum Dev 2006; 82: 257–66.

  • 26
    Holmes JM, Clarke MP. Amblyopia. Lancet 2006; 367: 1343–51.

  • 27
    Sharma A, Nash AA, Dorman M. Cortical development, plasticity and re-organization in children with cochlear implants. J Commun Disord 2009; 42: 272–9.

  • 28
    Kolb B, Brown R, Witt-Lajeunesse A, Gibb R. Neural compensations after lesion of the cerebral cortex. Neural Plast 2001; 8: 1–16.

  • 29
    Klaus MH, Fanaroff AA. Care of the High Risk Neonate, 5th edn. Philadelphia: WB Saunders, 2001.
  • 30
    McEwen BS. Physiology and neurobiology of stress and adaptation: central role of the brain. Physiol Rev 2007; 87: 873–904.

  • 31
    Van den Bergh BR, Mulder EJ, Mennes M, Glover V. Antenatal maternal anxiety and stress and the neurobehavioural development of the fetus and child: links and possible mechanisms. Neurosci Biobehav Rev 2005; 29: 237–58.

  • 32
    Van den Bergh BRH. Developmental programming of early brain and behaviour development and mental health: a conceptual framework. Dev Med Child Neurol 2011; 53 (Suppl. 4): 19–23.
  • 33
    Braun K, Bock J. The experience-dependent maturation of prefronto-limbic circuits and the origin of developmental psychopathology: implications for the pathogenesis and mental disorders. Dev Med Child Neurol 2011; 53 (Suppl. 4): 14–18.
  • 34
    Kikkert HK, Middelburg KJ, Hadders-Algra M. Maternal anxiety is related to infant neurological condition, paternal anxiety is not. Early Hum Dev 2010; 86: 171–7.

  • 35
    Bartlett DJ, Chiarello LA, McCoy SW, et al. The Move and Play study: an example of comprehensive rehabilitation outcomes research. Phys Ther 2010; 90: 1–13.

  • 36
    Symington A, Pinelli J. Developmental care for promoting development and preventing morbidity in preterm infants. Cochrane Database Syst Rev 2006; 19: CD001814.

  • 37
    Wielenga JM, Smit BJ, Merkus MP, Wolf MJ, van Sonderen L, Kok JH. Development and growth in very preterm infants in relation to NIDCAP in a Dutch NICU: two years of follow-up. Acta Paediatr 2009; 98: 291–7.

  • 38
    Guzzetta A, Baldini S, Bancale A, et al. Massage accelerates brain development and the maturation of visual function. J Neurosci 2009; 29: 6042–51.

  • 39
    Guzzetta A, D’Acuto MG, Carotenuto M et al. The effects of preterm infant massage on brain electrical activity. Dev Med Child Neurol 2011; 53 (Suppl. 4): 46–51.
  • 40
    Hielkema T, Hamer EG, Reinders-Messelink HA, et al. Learn 2 move 0–2 years: effects of a new intervention program in infants at very high risk for cerebral palsy – a randomized controlled trial. BMC Pediatr 2010; 10: 76.

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Communicating About Disabilities With Your Child

24 Sep

The attraction to disability may be nothing mo...

Image via Wikipedia

So – your child has received an IFSP (individualized family service plan) or the IEP (individualized education plan).  They are now going to start receiving services.  You receive copies of reports and now have to absorb in black and white what your child’s difficulties entail.  These are very hard for a parent to read.  Maybe you need some support in understanding the disability, learning how to help your child.  Does this sound familiar?  This is now your life and your child’s life. You have to look the problem right in the face, just as the people in the picture above are doing to something that is unknown to us, but in the distance. You are not sure really what it is but as the figure moves closer,  a new reality takes place for you and your child. 

Good news is that those who work with infants, toddlers, older children and adults with disabilities or learning differences can act as invaluable supports.  They can help advocate for your child and aid you as a parent in understanding the nature of the problems with which he or she lives.  Professionals can help you learn how to teach your child about compensating for the difficulty that they have so that they develop into functional and safe adults. 

There  is an important key here – we are talking about your CHILD.  Parents do a disservice to your child if this is not something that is not openly discuss at home,  from the time that your child is young.  You may readthis and wonder how in the world do you talk to a child about the problem that they have and at what age?. 

Preschool aged children with disabilities are in classrooms with typically developing classmates, depending on the severity of the problem.  At younger and younger ages children are consequently becoming aware of differences in others.  This concept mayy already be discussed at school before you have gotten around to it.  Your child deserves to hear about their personal situation from their parent or other primary caregiver first.  So – here are a few jumping off  points for you.

With a child as young as preschool age, you might start very simply at pointing out things that a child may see around him or her.  Perhaps you pass by a person who is blind and walks with a seeing eye dog.  Talk about what the dog does.  A family member wears glasses, a person is in a wheelchair, the universal symbol for handicap accessibility.  Discuss theese situations.  

Your child’s teacher, school director, religious leader and/or the pediatrician might able to guide you in recommending books that describe the disability specific to your child.  They may also know about books that describe children in general, who may have disabilities or difficulties in learning.

Television shows such as “Dora the Explorer“, “SpongeBob Square Pants“, “Little Bear” and “Sesame Street” have episodes  in which the children have disabilities.  You may choose to watch these shows with your child and discuss this if the situation presents itself. 

Talking to your child, especially as they are young adults of what they have to do to keep themselves safe. For example, if they take medication then perhaps they should not be drinking alcohol. If they have a physical disability and want to drive a car, they may need to be guided in terms of adapting the vehicle.  Again – be guided by professionals treating your child for especial significant points to discuss with them. 

 Part of maturing as a person is understanding who we are.   If we do not truly do so, then how can we take care of ourselves as we grow.  Consider this true story.  A young man who lives with ADHD at his Bar Mitzvah (a right  of passage into adulthood; typically at the age of thirteen, within the Jewish religion) prepared a discussion about the Torah portion for that week.  He presented it to his family and friends.  The discussion was striking.  The young man said that he thought that the Biblical character, Moses, had difficulty controlling his anger and had an impulsive side to him.   He illustrated that within the Torah reading for that week.  Further, he related this to himself.  He was able to openly discuss his own disability, having recognized it in someone else. 

The next day, the same teen-ager left for school and by the end of a year demonstrated some ability to calm himself down in moments of anger more efficiently so that he was not physically hurting  other people. In this particular case, it is an ongoing process – but his awareness of the problem is ultimately what is enabling him to compensate for it.  He has taken ownership for this particular aspect  of his personality. 

Resources  are out there to help parents as well as adults.   Here is a sample of a few that might be meaningful for others reading this post but you can generally find this information by just typing into a search bar the name of the disability, illness, problem and information for parents, children and adults generally are found. 

CHADD (children and adults with ADHD) www.chadd.org has a link that is designed to give parents information

Sensory Processing Disorder Foundation www.sinetwork.org

Autism Society of America www.autim-society.org

Stuttering Foundation: tips for parents www.stutteringhelp.org

American Speech-Language Hearing Association: www.asha.org has a link for “self-help groups for speech-language and swallowing disorders” and “resources” which links you to ways to help a child  or adult understand a hearing disorder

American Psychiatric Association www.ParentsMed.Org provides resources about medication for children as well as adults

Epilepsy Foundation www.epilepsyfoundation.org

If you go into either www.pbsparents.org or www.nick.com and type in a search for information, programming related to children with disabilities a number of resources are loaded and provide assistance for both parents and caregivers.

If anyone reading this has more information that they think would be useful for others, please comment so that others can benefit.  Thanks.

Early Intervention….What is the Point??

17 Sep

I have been writing a lot about education and what we can do for our older children who have an IEP (individualized education plan); but, what about our younger citizens.  I am talking about the children who have an IFSP.  Do you know what that is?  It is a document that is less well known to those in the education world  – at least i think that is the case.  I am talking about an IFSP (individualized family service plan).  It is somewhat different.  An IFSP is issued to infants and toddlers from ages from zero to thirty six months.  What age is zero? Some readers may not know that this refers to a child under one month of age.  Some people have asked me and readers may not realize what can be done for children at this age.  the answer is “a lot”. 

The reason that we can do a great deal to help children in this “window” is because there is a great deal of plasticity in the brain at this age.  That means that the brain is in the process of growing quite rapidly in these  early years.  Those of us who work with children in this age group are working towards helping create connections in different parts of the brain.  It necessitates that we work with the family.  That is where the “family service plan” comes into play.  The involvement of the whole family is imperative towards any type of improvement.  These are really young children.  If you have a child who has a birth injury such as cerebral palsy, those of us in the industry may work together to write a justification so that your child can get a wheelchair. 

So – who are we??

physical therapists who could be working with children who are not turning over, are not able to crawl or stand up.  

occupational therapists who could be working  with children who have sensory problems – they have  difficulty eating independently, holding a botttle to drink, dressing themselves, using the smaller muscles in their fingers to hold a pencil.  They may not be able to hold a stuffed animal.  Children may not tolerate certain textures of clothes.  They may have trouble falling asleep. 

speech-language pathologists who  could be working with children who have difficulty swallowing liquids or eating solid foods.  We may see children who cough when drinking, or may need a different consistency of food so that they do not cough on it.  The muscles in their mouth might be weak, they may be drooling, they may not allow you to come near their face.  We deal with children who may not have adequate hearing skill so that they can learn language and we may need to help parents arrange  for testing. Some children may not allow their parents to brush their teeth and we work on desensitizing the mouth so that the child will allow a toothbrush in their mouth.  Some children have a neurological problem that impacts on function and all of us may  work together along with

special instructors who address the cognitive delays and educational needs of the child.  Some special instructors have a specialty area in using an approach called applied behavioral analysis. 

social workers come in the home and work with families regarding a wide range of issues such as support services – respite care, financial matters such as application for WIC so that their children can eat! 

nutritionists who may work with the parents in consultation with a speech-language pathologist and pediatrician or gastroenterologist to ensure adequate management of this area.

Does this help answer “what is the point?”  Look at all the work that we are doing!  Things that we take for granted are issues that the allied health professions and educators are acutely involved with in their daily practice, in treatment of infants and toddlers.  We can make a huge difference!   Read more about the concept of brain plasticity.  i found a link when i searched this term that talks more about neuroplasticity.  www.sharpbrains.com/brain-plasticity-how learning changes your brain.  I encourage you to read this and any other articles you can find on the topic.  i also would love to hear about other articles that you may read.  Please comment with the references.

In NY state there is an organization of us who are advocating for our special needs children and highly concerned caregivers.  There are significant cuts to the funding for the early intervention program that we feel are highly detrimental.  Gains that we can help facilitate in the window of time to which i have referred will be lost if intervention is not provided.  I encourage those of you in ny state to be aware of  www.unitednyeiproviders.weebly.com and read about ways that you can help.  A group will be lobbying in Albany this week, on September 20th.  Information about the agenda and issues that we are advocating for in ny state is on the website i have listed.  I believe that there are similar groups in other states that are advocating for the same needs because of so many cuts to the Department of Health and programming funded through medicaid.  If there are some in your state, please publicize them and get the word out. 

Let’s intervene before it is too late!

Getting Started in the New School Year: Checklist for you…

16 Sep

An orange check mark.

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Ok…now it is week two. 

BE AN ADVOCATE.. and keep going…..

Your child in the new school has a counselor. Call that person who you got the name of during week one.

Follow up.  Check if they have that IEP. If they do not have the IEP with their school name on it then you will need to call your local school district and have them send it on.  Request a copy for yourself too. 

Ask to double check your child’s daily schedule – regardless of their age.  Are they getting the classes that they are supposed to be.  Are the preschool programs in sync with what you were told that they would be.  Just check.  If you are confused then ask now.

Try to get the name of the therapist who is going to work with your child.  Just work on getting a name at this point of the year.    

Get a composition book and proactively write “communication book” on the front of it.  This book should be given to your child’s teacher  or counselor with a request that it be given to the new therapist.

Write a note introducing yourself in the communication book and  ask for the new therapist’s name and phone number.  If the therapist has an email ask for that too.

Ask the therapist -in your introductory note, to connect with you when your child begins session and to give you their name.  Offer your contact information and keep a line of communication open.

Give the therapist a couple of weeks to respond to you.  It sometimes takes a little bit of time to get schedules together.  In the meantime – YOUR homework is to lay the groundwork for organizing communication between you and the school.  You should have the IEP at the school by the end of this coming week, if not earlier. 

BE PERSISTENT…. and KEEP GOING….

My child just got an IEP (individualized education plan) and is in a new school this year. What do i do???

4 Sep

"Teacher Appreciation" featured phot...

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Is your child starting a new school?  If so, you most likely are feeling a certain amount of anxiety, as is your child if he or she is old enough to understand what this means for them.

BE AN ADVOCATE

Ensure that your child does not fall through the cracks….

You might think something like …what are the teachers going to be like?  will my child like his or her teacher and will they make friends at the school?  You are probably wondering when the services that are authorized will start.  Well – here is news for you they may not start on time unless you stay involved.  This is not to put down anyone who might an administrator or teacher in any one school – but things sometimes happen, especially in a large educational system – like the public school system.  You  a tremendous help and partner in making sure that your child gets help.  Here are some quick suggestions for you to keep in mind.

Having worked in schools; with the professional hat on (so to speak), i can give you some advice. Some schools do not see the paperwork for students who have an IEP (if it is a public school program, especially) until the school district sends them over.

It will be helpful if when you go to school – during the first week, stop by the main office and give the principal a copy personally.

Get the name of the director of special education services at the school. If that is not the exact title – just explain to the staff that your child receives services – he is mandated for — therapy (fill in the blank) and you would like to introduce yourself.  I believe that they will really appreciate this initiative on your part.  It also sends a very positive message to the school about YOU as a parent. 

Now that the school is aware of the fact that your child is to be receiving services….Make sure that your child is on the list of students who should be receiving services in the school. This is extremely important because sometimes not all the names have been sent over from the district office.

Inform your child’s classroom teacher and ask for the name of the person who will be providing services.  Get a phone number/extension for that person and an idea of when they will be in school. Be aware that sometimes related service providers/therapists might travel between different schools during any particular work week.

Ask the school in a few weeks to tell you of the schedule for therapy for your child.

Ask the therapist for a weekly report – bring in a composition book…put in your name and phone number and ask for theirs. 

Double check the number of sessions that your child can receive during the year.  With budget cuts impacting on services across the country and possibly, a limit on this should not be overlooked!

In October – we will revisit this topic for next steps.  Schedules may not necessarily be finalized until the first few weeks  into that month – but make a start to get involved in the process.  It will be appreciated and most important – will benefit both you and your child.

How Do We Get Back to School?…..I’m Lost..

2 Sep

Lunch boxes

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Heading Back to School..A Change of Seasons and a Need to Re-Organize.

Organization is hard for most people – so sit back and take a breath.  Read on and think about what is important for YOUR family. Maybe this post will be useful for you…..and maybe you will have other thoughts of what works for you that might be helpful to others.  Please share…

School sales started even before August 1st. I had trouble with that. It seemed too soon to be broaching the topic of the change of seasons. Well – it still does. Some things cannot be changed I suppose. The “new year” is here. I say that because to me the year ends at the end of August and it always starts September 1st…oh no! is that today?? (gulp).

The Annual Chores Related to the Beginning of School are Upon Us….

School Supplies: an annual rite of passage

I did not see that many “back to school” sales for awhile. Maybe i did not want to see them. Time has marched on the past few weeks. Late last week I walked into a stationery store to get some toys for work. Aside me was what appeared to be a mother and daughter on a shopping spree for new school supplies..an annual rite of passage. It starts again…the hunt for that clean and crisp new notebook, new pens filled with ink, unsharpened pencils, crisp notebook paper etc. I must be dating myself – but one ritual I remember was making book covers from the nice shiney ones that they sold in the stores.  They were paper with pretty designs.  As we got older, my parents gave us paper bags (my brothers and I).  I also remember metal lunch boxes, insulated bags, ice packs and thermos bottles for lunch box preperation. It was always nice to have a matching box and thermos at school. Everything had to be properly labelled.  Look at the lunch boxes above..in the picture…It was so much fun to pick out a new one.

Clothes

Make sure that you have the proper uniforns, shoes/socks, a sweater and a bookbag

On hold, but on the list for later:  wintercoat and boots, gloves, scarf and hat-depending on where you live.

Schedules and Routines:  Manage These With Ease:

You probably have a child or a few children around at home grumbling and growling about the fact that they will lose a certain amount of freedom next week. Alarm clocks wil be set again a bit earlier. Baths will have to be taken earlier. Bookbags will need to be packed and clothes laid out before bed. You probably have numerous rituals like this in your household. How to begin??? Make a list of the ones that are important for your particular household. You may even want to get a wipe off board and post daily schedules on it , an academic school calendar might be helpful to note the school holidays, teacher conference days and medical appointment dates for example.  Post this and a list of emergency phone numbers on a bulletin board. Office supply stores will have a large selection of these for you to choose from.

Practice Will Help Everyone 

Whatever routines you have organized for your individual family….try and  use them over this holiday weekend.  I  recall at night that i would be helping my mother set the table for the family (five of us) at night, after all of the dishes were cleaned up from dinner.  Lunches would be made and then plans for the nexr night’s meal.  Mom would even season food the night before sometimes, if she was going to be leaving early for her own job,  in the morning. As we got older, she left earlier. 

i have always found nighttime to be the most challenging.  So- I am going to suggest that you practice setting out the clothes at night,establish the bath schedule for your child/children and put it to use over the weekend.  Set up a routine bedtime forr everyone and get a good night’s sleep……it is going to be a busy year…

Hope it is a very happy and healthy one for you and yours

Related articles

Hurricaine Irene and Special Needs

28 Aug

I am interested in knowing how special needs parents managed during the hurricaine on the east coast.  How did your children manage – those with sensory issues who may have seen the lightening strikes, the pouring rain and heard the rain pounding down. 

What can we do to calm our children down in these moments of potential sensory overload from a natural disaster?  perhaps this post is a day late…but ….

I recall nights of walking my son in his stroller for an hour outside at nite when he was a toddler to gelp him get to sleep.  I learned that rubbing his head and covering him with a heavy and tightly woven throw helped to calm him down.  Lowering the lights and rubbing his back also helped him relax for sleep.  Sometimes allowing your child to watch television or a favorite movie may be a good distraction from the outside distractors that may be scarey. 

In moments of anxiety:…..Don’t ask me how it started…. but one night he came up with an idea.  My son pretended that a bare wooden floor in the living room area was an ocean filled with sharks.  We would race up to a carpeted staircase that led up to the bedrooms and that wasa our “safe zone”.  When we were there everything was okay. 

It may be something that you do anyway – but lying down next to your child in bed and reading to them with a soft light on – a calming story such as “Goodnight Moon”, “The Very Hungry Caterpillar” or “Brown Bear, Brown Bear” may help.  I recall–my mother reading to me at night till I fell asleep.  Rituals such as these are reassuring to your child and  in moments of anxiety may be helpful for both of you – so that the nighttime becomes a less scarey time for your child and you both can get some rest….even when there is no hurricaine outside.

I hope all got through last nite safely and are reading this in a home with electricity and running water.  I would welcome hearing about how you managed last night with your special needs child.  Perhaps we can all learn from eachother.  Please subscribe to this blog and share your experiences….

Look forward to hearing from you…

I

ADHD Cases on the Rise According to ABC News….Now What do we do???

19 Aug

ADHD Cases on the Rise – ABC News.

WOW….this is now being realized and you can read this article or search for others as they are being written in a number of publications recently.  That is not the point of this post.  Please read on..now that I have your attention….let’s focus 🙂

Given this recent finding,  I think that it is going to be so important for people to know more from those of us involved in raising children with the problem, those of us who actually work with these individuals in our professional lives, those of us who may actually diagnose the condition and have to discuss the signs and symptoms to the adult or the parents of a child. I am not convinced that people truly understand this disorder.  Knowledge is power and if we empower others with more information about what makes the ADHD brain tick,,,what makes it unique and what struggles and strengths it brings to the lives of those who live with it day to day then it will make it so much easier for them.  I believe that this goes for most medical problems or differences with which a person lives.  The more you understand the easier a time you will have in life.  You will be able  to learn to compensate and perhaps even overcome the obstacles.  

With this in mind….

Please….. Tell – the parent, the adult, the child  who is old enough to understand…what the struggles will be that they may face.  Please – help them to understand the signs and symptoms of ADHD that may affect them in their day to day lives.  What resources are available to assist them.  What some of the conditions are that may potentially coexist with this such as oppositional defiant disorder, conduct disorder, mood disorders, anxiety.  The impact of medication – including  its side effects is extremely important to relate.

I have heard comments like: I do not understand why my skin gets itchy if i put cream on it, why does this fabric bother me? he only eats soft spicy food….nothing else!  it is so hard to find foods that my son/daughter can eat because he is so fussy.  my child cannot fall asleep, “i have insomnia”, another says.  “turn off all the lights …it is too bright in here”, “i can’t eat this (maybe it is the texture of the food), “he won’t let me brush his teeth and washing his hair is a struggle because he pulls away”.  Educate people about the sensory integration and regulation difficulties like these.  Let them know that this is just a part of their make-up.   

Years ago I went with my son to the circus…..never again! He was overcome by the loud noise.  Neither the sensory overload during a vacation such as Disneyworld nor the quiet and peaceful setting where all slowed down on a dude ranch would work as vacation sites.  The predictability of a setting like Club Med – where the transitions from one activity to another could be planned in advance and known – no unexpected changes was a better fit…albeit not perfect.  A trip like a cruise may or may not work….yes it is predctable and there is a structure in place before you go; but, would the pace of getting from stop to stop during the vacation be too slow?  I do not have ADHD but would find this an issue.  Something to think about ….

For parents of children both camp settings and schools need to be considered.  A play ground of five hundred students waiting to start the day standing in line, then heading like a stampede, running up the staircases in a loud and echoing stairwell to the classroom…. by the time upstairs in the class, the ADHD student would be ready for time out to de-stress from the experience of even preparing for the classroom setting. There are specialized camps for children and programs for teens with ADHD.  Teachers at school and counselors in a camp setting need to understand the problems that may occur.  

College students with ADHD will have to advocate for themselves and also be aware that there may be better programs for them then others that may not be geared to the learning differences with which they come to school. Research the programs that are available.  Talk with organizations that cater to the person with ADHD and join a support group so that you can gain resources.

We need to be advocates – for ourselves, our patients, our children.  Please help…..

Considerations for Adoptive Parents…a personal and professional perspective

11 Aug

Sixteen years ago,  i was sitting in the library researching areas that i thought might be best to place ads geared towards biological parents who wanted to place their newborn in the hands of adoptive parents.  My now fifteen year old son’s father and i were anxious to find a newborn and worked with our attorney – placing advertisements in Texas publications.  As advised by our adoption parent committee mentors here in new york city we acquired an 800 number and ultimately received calls from a number of women, including a hopeful surrogate.  This was a path that we chose not to pursue.  We, created business cards and told many people that we were in this process.  My most important concern at the time was locating a healthy newborn.

Something now in retrospect strikes me as interesting,,,,,i have no recollection of having picked up a book such as “what to expect when you’re expecting”. The only book that i recall reading was one given to me by one of my brothers.  It pertained to care of a newborn.  Alone in San Antonio for ten days, my son’s father and I found this extremely useful.  Perhaps I am forgetting something; but, I do not recall any workshops at monthly meetings or annual adoption conferences in which this was discussed. 

At this point, i work with newborns and children in early childhood year as a speech-language pathologist, mostly in their homes.  Some of them have adopted children. In preparing this post, I reached out to my colleagues about what literature they may have come across related to this topic.  I started to realize that there are some professionals in my industry that actually specialize in working with these children  A new revelation.

I am working on gathering more material about adoption for upcoming posts.  There is a lot of information for just one post.  For the moment, I suggest that prospective adoptive parents remember to read books that discuss typical developmental skills that you would see in children. 

Resources:

“Parenting” sections in bookstores such as Barnes and Nobles

“Parenting and Families” section  of the Kindle Bookstore – if you have this e-reader and i assume that the other e-readers have a similar section in their respective “bookstore”

Bookstores of the American Occupational Therapy Association, American Physical Therapy Association and American Speech-Language Hearing Association respectively, have books on their sites that you can consider

Parenting organizations in your area-check your phone books as they are also a great wealth  of information.

It Takes Two to Talk: A Parent’s Guide to Helping Children Communicate by Ayala Manolson

Autistic Wandering: a new ICD-9 code as of 10/1/11: Think about it from different perspectives!

1 Aug

I look at this code from a few different perspectives.  Let me share with you, if you have the time to take a look at this post. 

As a child; if I am recalling this correctly, my cousin who is six months younger than I had wandered out from his home in New Jersey.  People were looking for him.  Yes, he was finally found; but, this now autistic adult could not relate to you his name.  At least, that was at the point that I last saw him which was some time ago.  I do not think that he had the acuity of expressing general knowledge that included his address or phone number.  I doubt that he could have been able to relate to another person that he was indeed lost.  We are out of touch now, but the disorder is not. 

My colleagues have written questions about what the practical implications of imposing a label such as this on autistic persons will have.  I respond with a question:  How would an autistic person who wanders off, a person who could not even communicate that he was lost, could not give them his or her name to another people feel.  He or she would  most likely be scared.  When a person who is autistic becomes that way he or she generally has difficulty managing their own behavior.  I remember seeing that.  In layman’s terms, you may call it being confused and visualize it in the form of a tantrum. So, what does alerting others to the tendency for a person to wander off do. Think about this from a practical standpoint, the viewpoint of the person who is experiencing this.   I think this is an incredibly helpful move on the part of the mental health community and a way of keeping people who are autistic safe. As well, defining this for people who suffer from dementia has the same meaning to me.  I applaud their efforts. 

As an add-on thought to this “issue of the week”, so to speak, I wonder how others literally on the street would hear about this disorder were they to find someone “wandering”.  Rather than thinking of them as potentially drunk or as having consumed illegal drugs i think it would also be helpful if these people were automatically given a bracelet that identifies them out in public as having this condition. One could consider this as a safety precaution.  Some people wear medic alert jewelry or watches to identify themselves and their medical condition, in the event of an emergency.  It would be helpful for all of us.  It is just a thought and if you are a healthcare provider, a parent or caregiver in my opinion it would becould to consider using this type of “identification system”, for lack of a better word..   

I keep reading about this announcement within various social networking venues.  As I wrote in my post of last week, describing the symptoms of a problem very specifically; defining the label will only help others to understand the condition and perhaps drop some prejudice towards these people. This is my opinion and one that I recall was actually discussed years ago during graduate school, as a part of a diagnostics class in which we were writing evaluations.  I learned to describe exactly what I saw instead of putting a label on it.  Interestingly, it seems that history is repeating itself.  Now it is coming out in public, outside of the classroom and into the “real world” where I think most of us learn how to do our jobs.  I wonder what parents  and caregivers think? If you are reading this i would be interested in hearing.  I think my colleagues too would be interested in hearing from you. Please reply.