POWERED MOBILITY FOR VERY YOUNG DISABLED CHILDREN

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Churlene Butler Gary A . Okamofo Tummy M. McKay

Normal two-year-olds run t o peer o u t windows, move in constant exploration o f their surroundings, a n d tag along with older brothers or sisters t o the neighbor’s yard. For disabled children, however, while no o n e disputes tha t mobility is important , present management does not reflect a commitment t o providing it. Management focuses o n or thopedic treat- ment a n d physical therapy t o facilitate some form of eventual ambulat ion. Even when the prognosis for ambulat ion is poor , primary-if not exclusive-attention is given t o casting, bracing, surgery a n d therapy t o promote ‘normal’ movement. These t reatments themselves may inhibit mobility further for long periods of the child’s early life.

Locomotion a n d o ther motor skills which develop rapidly during the first three years of life become the primary vehicle for learning a n d socialization, a n d for the healthy growth of a sense o f independence and competence. Restricted experience and mobility during early chi ldhood have a diffuse a n d lasting impact (Becker 1975). If there is n o efficient ambulat ion after t h e age of one year, a developmental approach t o management should substitute a n alternative means of mobility for the child. T h e aim would be t o promote over-all development ra ther than merely improve the musculoskeletal disorder, although of course the latter cannot be ignored

(Rosenbloom 1975, Bleck 1977, Breed a n d Ibler 1982).

Motorized wheelchairs have been effec- tive in providing mobility for older severely disabled children a n d adults, so we introduced nine children aged between 20 a n d 39 months t o them t o determine whether they would also be effective during t h e formative years of life.

Procedure T h e six girls and three boys were outpat ients with various disabilities: cerebral palsy, osteogenesis imperfecta, limb deficiency, spinal muscular a t rophy, myelomeningocele a n d arthrogryposis multiplex congenita. All were of normal intelligence but their mobility was severely restricted. Only minimal adaptat ions t o the seating were required t o enable them to use conventional motorized wheelchairs with a joy-stick control.

T h e children learned t o drive the wheelchairs a t h o m e under parental supervision. They were given maximum opportuni ty t o use the chairs each day , a n d parents kept a daily log, including readings from a n engine meter which measured driving time ( i e . the t ime in motion).

Independent mobility or competent driving was considered t o be attained when the child demonstrated mastery of seven skills: s topping a n d starting, driving straight in open areas , driving straight in

narrow corridors, turning around, turning corners, backing, and coming in to close proximity to people and furniture. The parents also needed to feel comfortable about leaving the child alone for five minutes or more operating the wheelchair. Driving skill was documented on video- tape.

The children continued to use the wheelchairs for one month. Family interviews at the end of the study provided information about the frequency of wheelchair use and the family’s perception of the impact of the mobility on their child’s behavior.

Results Eight of the nine children became independently mobile in the wheelchairs, the youngest at 24 months of age. They demonstrated remarkably skilful driving. Seven achieved competence in less than three weeks, after between 1 . 7 and 12 hours driving time. The eighth child made no attempt to drive for six weeks, but learned during the seventh week after 5 . 2 hours driving.

These children subsequently used their wheelchairs for an average of two to four hours daily, seven days a week. Their parents provided many anecdotes to illustrate the positive influence this independent mobility had on the children’s social, emotional and intellectual behav- ior. They also noted a sudden interest in other forms of movement (e.g. riding a rocking horse, pushing a small bike) and in activities which involved movement in the wheelchair ( ~ . g . playing baseball, going ‘hiking’ with the family).

One child of 20 months did not learn. During the four months she had the wheelchair she was repeatedly ill, often listless, and was admitted to hospital twice for emergency surgery on her cerebrospinal fluid shunt. Family obligations further limited her opportunity to learn.

Discussion Motorized wheelchairs offer immobile children a safe and efficient method of independent movement. They can learn to drive skilfully, with minimal professional involvement, within a short period of time and at a much younger age than once would have been thought possible. Powered mobility motivates further move- ment behavior by the children and, like ambulation, promotes their intellectual, social and emotional development.

A(~knou~led~~rment.r This work was supported in par t by the Washington Association for Retarded Citizens, the Biomedical Research Gran t f rom the National Institutes of Health. and Research Gran t No. G008200020 from the National Institute of Handicapped Research, Dcpartment of Education, Washington D .C . 20202.

The Everest and Jennings and the Solo companies provided the basic equipment. Abbey Medical Company and its representative, Holly McCollum, gave technical support .

Authors’ Appointments * C h a r h e Butler, Ed.D. , Special Educator , Seattle Public Schools, and the Division o f Congenital Defects: Gary Okamoto, M.D. , Assistant Professor, Depart- ment of Rehabilitation Medicine: Tammy McKay. B.A., Research Assistant, Depart- ment of Rehabilitation Medicine; University of Washington School of Medicine and Children’s Orthopedic Hospital a n d Medical Center, Seattle, Washington 98105.

*Correspnndcnce to firvt nuthor: 2143 N. Northlake Way, Seattle, Washington 98103.

SUMMARY Nine motor-disabled children with normal intelligence and varying degrees of disability were studied to see if competent control of a motorized wheelchair IS attainable between 20 and 39 months of age. Each child used a conventional motorized wheelchair with adaptive seating. Parents supervised the learning at home. Eight children drove safely and independently within I ’ 7 to 12 hours accumulated over a one t o seven week period. Parents reported that this independent mobility stimulated their child’s social, emotional and intellectual behavior.

RESUME La mobilitP ne prur pas attendre: mohilitP n.~sirrPe rhez de tr6.r jeune.r hnndicupPs Neuf enfants handicapis moteurs d’intelligence normale et prksentant des degres varies d’infirmitt ont Ctt i tudies pour voir si le contrhle correct du fauteuil klectrique pouvalt &tre obtenu entre 20 et 39 mois d’ige. Chaque enfant utilisait un fauteuii klectrique conventionnel avec un siege adapt&. Les parents surveillaient I’apprentissage a la maison. Huit enfants conduisirent avec s icur i t i et indkpendance, aprks I ’ 7 a 12 heures &tendues sur une ptriode de une a sept semaines. Les parents on t signal6 que cette mobili t t autonome favorisait le comportement social, &rnotionnel et intellectuel de leurs enfants.

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ZUSAMMENFASSUNG Ben'eglirhkeit kann nirht wartm: motorisiertc Beweglichkeit f u r sehr junge hehinderre Kinder Neun motorisch behinderte Kinder mit normaler Intelligenz und unterschiedlichem Behinderungsgrad wurden untersucht u m zu beurteilen, ob im Alter von 20 his 39 Monaten eine sichere Kontrolle iiber einen motorisierten Rollstuhl erlangt werden kann. Jedes Kind benutzte einen konventionellen motorisierten Rollstuhl mit adaptiertem Sitz. Die Eltern iiberwachten den LernprozeP zu Hause. Acht Kinder fuhren sicher und selbststandig nach 1 ' 7 his 12 Stunden, die uber einen Zeitraum von einer his sieben Wochen verteilt wurden. Die Eltern berichteten, dap diese unabhangige Beweglichkeit das soziale, emotionale und intellektuelle Verhalten ihrer Kinder stimuliert habe.

RESUMEN La movilidad no puede esperur: mohilidud motorizudu para nitios incupacitados muy jovenes Se estudiaron nueve niAos con incapacidad motora, con inteligencia normal y grados diversos d e incapacidad, con el objeto de ver si era posible alcanzar entre 10s 20 y 39 meses de edad el control competente de una silla de ruedas con motor. Cada niiio us6 un t ipo convencional de silla de ruedas con asiento adaptable. Los padres supervisaron el aprendizaje en casa. Ocho niiios condujeron sin datio y de forma independiente entre 1'7 y 12 horas acumuladas a lo largo d e u n periodo de una a siete semanas. Los padres afirmaron que esta mobilidad independiente estimulaba en sus nifios el comportamiento social, emocionale intelectual.

References Becker, R. D. (1975) 'Recent developments in child

psychiatry ( I ) . The restrictive emotional and cognitive environment reconsidered; a redefinition of the concept of therapeutic restraint.' h a e l Annals qf Psychiatry and Related Disciplines. 13, 239-258.

Bleck, E. E. (1977) 'Rehabilitation engineering services for severely physically handicapped children and adults.' Current Practice in Orthopedic Surgery, 7, 223-245.

Breed, A. L., Ibler, I. (1982) 'The motorized wheelchair: new freedom, new responsibility and new problems.' Developmental Medicine and Child Neurology, 24, 366-371.

Rosenbloom, L. (1975) 'Consequences of impaired movement: a hypothesis a n d review. In: Holt, K. S . (Ed.) Movement and Child Development. Clinics in Developmental Medicine No. 55. London: S.I.M.P. with Heinemann Medical; Philadelphia: Lippincott.

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