Giving a Face to a Hidden Disorder: the Impact of Dyspraxia

Giving a Face to a Hidden Disorder: The Impact of Dyspraxia

Debi J. Stansell

An Article Published in TEACHING Exceptional Children Plus

Volume 4, Issue 1, September 2007

Debi J. Stansell

Abstract

Developmental Verbal Dyspraxia (DVD) is a disability with many names, yet it often goes without being diagnosed or treated. A neurological disorder, it involves motor planning throughout the body when the brain is unable to communicate directions to the muscles. With no obvious physical indications, it has been referred to as the hidden disability. Discussing the characteristics of dyspraxia in this article will, I hope, help teachers to recognize the possibility of this disorder, and ideally will act as a resource for possible interventions. As educators, we have a unique opportunity to help children reach their full potential, but we must ﬁrst be aware of the special needs for the dyspraxic child that should be acknowledged and appropriately addressed.

Keywords dyspraxia, apraxia, speech problems, speech delay

SUGGESTED CITATION: Stansell, D. J. (2007). Giving a face to a hidden disorder: The impact of dyspraxia. TEACHING Exceptional Children Plus, 4(1) Article 2. Retrieved [date] from http://escholarship.bc.edu/education/tecplus/vol4/iss1/art2

2! Developmental Verbal Dyspraxia Having a child with a disability takes (DVD) is a disability that has many different parents down a path they never dreamed they names, and yet is virtually unknown. It often would travel. Their plans and dreams are goes without being diagnosed or different from the ones imagined treated. Specialists usually are during those expectant days able to diagnose DVD more by Strokes or other before his birth. As Emily Perl ruling out what it is not than by trauma may cause Kingsley writes to depict the pinpointing what it is. Since it is dyspraxia ... or it experience of raising a child with difficult to diagnose, with no ob- may be present a disability, “… the stewardess vious physical indications such from birth. comes in and says “Welcome to as a contracted hand or a limping Holland.” Holland?? You say. gait, it has been referred to as the What do you mean Holland? I hidden disability. My personal experience, signed up for Italy! I am supposed to be in however, has given this little known disorder Italy. All of my life I have dreamed of going a face, that of my beautiful 30 month old to Italy. But there has been a change in your grandson. To the families of children with flight plan.… if you spend your life mourning dyspraxia it is anything but hidden, and I un- the fact that you didn’t get to Italy you may derstand firsthand the frustration and fear of never be free to enjoy the very special, the those families trying to very lovely things… about explain to well meaning Holland.” The challenge friends, medical profes- WEBSITES WITH MORE is to be able to enjoy the sionals and teachers the INFORMATION: trip and the sites along the challenges that a child way even though they are with dyspraxia faces. This The Dyspraxia Foundation: different than the ones is not a child who is just a www.dyspraxiafoundation.com you originally intended to little slow to develop, or a visit” (Kingsley, 1987). child who simply hasn’t As educators, we perhaps National Center for Learning acquired certain motor have a unique opportunity skills or speech yet. The Disabilities: www.ncld.org to act as Dutch tour child with dyspraxia is guides in the above often a child who has National Institute for illustration, helping above average intelli- Neurological Disorders: children reach their full gence who is attempting potential and allowing www.ninds.nih.gov to cope with a real parents to enjoy the disability:“There are dys- success their children can praxics of all abilities and Childhood Apraxia of Speech achieve in school, but for while some are very Association: www.cec.sped.org children with a disability, bright, no matter how we must first be aware of good their ideas, they their special needs that cannot commit them to paper” (Portwood, should be acknowledged and appropriately 1999). addressed.

3! What is Dyspraxia? the disorder are: The definitions for dyspraxia are Childhood Apraxia of Speech (CAS) varied and numerous, as are the names used Developmental Verbal Dyspraxia (DVD) Developmental Apraxia of Speech (DAS) to describe the disorder. According to the Sensorimotor Dysfunction National Institute of Neurological Disorders Developmental Co-ordination Disorder and Stroke defines developmental dyspraxia Perceptuo- motor Dysfunction as a disorder characterized by an impairment Specific Developmental Disorder of Motor in the ability to plan and carry out sensory Function (World Health Organization) and motor tasks (NINDS, 2006). Furthermore, all of the definitions agree on Causes of Dyspraxia what dyspraxia is not. It is not a muscle There are a multitude of theories as to disorder although it involves muscle the cause of dyspraxia, but the answer coordination and strength. It is not remains a mystery. Most would a cognitive disorder although it contend that it is a neurological affects the ability to read, spell [Dyspraxia is] disorder, although this is not and use language. It is a an impairment documented. Various evaluations neurological disorder that involves in the ability to have shown these children to have motor planning in all areas of the plan and carry no brain lesions or consistent body when the messages from the out sensory and differences in brain structure. brain are unable to communicate motor tasks. (Hall, 2000). The prevalent theory directions to the muscles. is that there is subtle brain Velleman describes it “…like impairment or malfunctioning. trying to watch cable t.v. stations without the This impairment may be so slight or right descrambler. There is nothing wrong so specific that it is impossible to isolate or to with the t.v. station, and nothing wrong with determine the cause. Birth or prenatal injuries your set. It’s just that your set can’t read the or oxygen deprivation may have occurred in signal that the station is sending some cases, however the majority of these out.” (Velleman, 2002 ). children have no remarkable birth history. Dyspraxia may be present in people The bottom line is no one knows the specific with autism spectrum disorder, Asperger cause (Guild & Vail, n.d.). syndrome and dyslexia. Strokes or other trauma may cause dyspraxia (acquired Who Is Affected? dyspraxia) or it may be present from birth To be a largely unknown condition, (developmental dyspraxia). dyspraxia affects a significant number of both children and adults. Barbara Lantin reports Other Names for Dyspraxia “dyspraxia affects up to ten per cent [of the Dyspraxia was first described as general population], two per cent severely. As congenital maladroitness then later as a with dyslexia, 80 percent of those affected are disorder of sensory integration. Dr. Sasson boys" (Lantin, 1997). If daddy is clumsy or Gubbay renamed it in 1975 as the ‘clumsy stumbles over speech, watch his sons child syndrome’ but fortunately this name is carefully. Shriberg suggests, “Familial no longer used. The more current names for involvement is suspected due to the data

4! collected on the occurrence in DAS families. (2000) reported, “A 1994 survey of 450 Boys are overwhelmingly affected more than members of the Dyspraxia Foundation girls. The statistics range from a 3:1 ratio to reported that most parents said they were as high as 9:1” (Shriberg, 1997). aware that their child had a problem by age three but, on average, the official diagnosis Identifying Dyspraxia was not made until the child was six and a Dyspraxia is truly the hidden disorder. half. Only a quarter of dyspraxic children are Parents who are certain that something is recognized as having the problem when they wrong with their child receive virtually no start school, and four out of five schools think support from the medical and educational the child will grow out of it.” Often, communities, and are frequently misled by pediatricians have little experience with the word "yet." Typical responses to parental dyspraxia, and may simply assure worried observations of problems with their child moms that their son is just a little behind include "He's just a late bloomer . . . he's just developmentally. “Many doctors have not yet not crawling/walking/talking yet . . . I become fully educated about dyspraxia and wouldn't worry about him yet." The word are just not aware that it is an acknowledged "yet" implies that waiting is an appropriate medical condition”(Stordy & Nicholl, 2000). action, and whatever the developmental Concerned parents fare no better when asking milestone involved is will simply come in schools why their child is having difficulty, time, both deleterious assumptions when since the same 1994 survey revealed, dealing with dyspraxia, since early astonishingly, that half of the children’s intervention is crucial for children struggling teachers had never even heard of the with the developmental and academic issues condition of dyspraxia. presented by this disorder. Stordy and Nicholl

Elijah was diagnosed with DVD at the age of 25 months. His mother and his pediatrician had been watching him closely due to his small head size (microcephaly). The diagnostic tests showed no ab- normalities, but he exhibited some of the classic signs of dyspraxia. Around the age of 18 months Elijah began speaking a few words, dada, cookie, cracker, bye-bye. However he lost his ability to use those words and eventually his vocabulary was reduced to “dat”-a one syllable utterance that he used for every- thing. This circumstance led to a referral to a developmental pediatrician, who then made the diagnosis. At Elijah’s six month follow up evaluation, the developmental pediatrician was pleased with his progress. The intensive (3 times a week) speech and occupational therapy is proving to be effective although the progress is slow. At 32 months, Elijah now has a vocabulary of 4 words- a big accomplishment for him. Elijah is fortunate to have been diagnosed and begin therapy at such an early age.

Elijah is now a big brother to Levi. Levi is babbling and meeting his developmental milestones on time, but since dyspraxia runs in families and is prevalent in boys, his parents and doctors will continue to monitor him closely for signs of DVD.

Thus, it is suspected that many students, simply because their teachers are children with dyspraxia are erroneously unfamiliar with the difficulties these children labeled as behavior problems or unwilling encounter every day (Stordy & Nicholl,

5! 2000). children have some of these problems, but There are a wide variety of indicators you will know the difference between a for dyspraxia, but the hallmark of dyspraxic normal child with any of these problems and speech development is inconsistency. In a dyspraxic [emphasis mine]"(Lantin, 1997). infancy, feeding problems may have been apparent, and they make few babbling noises. What Can Be Done? As a toddler, speech repertoire is limited and Early diagnosis and intervention is they may use one sound or syllable (dat) for critical. “Fortunately, dyspraxia can be a multiple meanings. Often children will begin problem largely confined to childhood as long to acquire speech at a normal time as children receive therapy. These in development, but may regress, children can and do improve, but The hallmark losing those words as they get they do not simply outgrow it older. Difficulty with speech is of dyspraxic without help” (Stordy & Nicholl, directly related to length of the speech is 2000). The child’s dyspraxic effort; thus, one-syllable words inconsistency. speech will continue to be filled come more easily than multiple with errors unless s/he receives syllables, and the child may be early, intensive therapy, defined as able to say words individually, but sentences direct sessions delivered two or three times a are likely unintelligible. A child with week, for at least two years. Most children dyspraxia frequently appears clumsy and who receive intervention can become uncoordinated, often bumping into and competent oral communicators (Guild & Vail, knocking over people and things. Fine motor n.d.). Occupational therapy in conjunction skills are extremely difficult and sometimes with speech therapy will improve motor painful to master. Pedaling and construction planning skills and speech patterns. The toys pose great challenges, and consequently occupational therapist will work to improve rarely interest the child. Some persons with daily life skills and coordination problems. dyspraxia are overly sensitive to textures and Nutritional supplements such as Omega-3 sounds. Daily tasks fatty acids and regimens of such as dressing and physical exercise are being tying shoes are typically I Shall Not Live In Vain studied as possible acquired at a much later If I can stop one heart from breaking, interventions for dyspraxia, age than his peers I shall not live in vain; focused on improving brain without disabilities. If I can ease one life the aching, c o m p o s i t i o n a n d T o f u r t h e r Or cool one pain, strengthening mental Or help one fainting robin, complicate the detection Unto his nest again, connections (Stordy & of dyspraxia, many of I shall not live in vain. Nicholl, 2000). these symptoms can be Having been an early indicators of other Emily Dickinson childhood educator for developmental delays or fifteen years, I am guilty of disabilities or may even be present in children being one who was ignorant. I would with no disabilities. The Dyspraxia probably still be ignorant and certainly never Foundation says: “Many parents will say their would have written this article if Elijah had

6! not come into my life. But now I am aware, References and as I walk through the halls of my school and listen to teachers’ conversations I cringe Hall, P. K. (2000). A letter to the parent(s) of as I hear, “he just needs to try harder…if his a child with developmental apraxia of parents would just work with him…he is speech: Part II: The nature and causes of lazy…doesn’t care ... can’t focus…won’t try." DAS. Language, Speech & Hearing Serv- My grandson’s sweet face suddenly appears ices in Schools, 31(2), 173 -176. Re- in front of me and tears well in my eyes. If I trieved January 22, 2007 from heard those words spoken about him, I would www.proquest.umi.com be crushed. He is a bright, caring child who tries to communicate in the ways he is able. If Guild, A. S., & Vail, T. (n.d.). What is devel- I take the time to look into his eyes I can opmental apraxia of speech. Retrieved understand what he wants to tell me and his January 23, 2007 from laugh speaks volumes to me. For me, he has www.tayloredmktg.com/dyspraxia put a face on the hidden disability of dyspraxia, and brought into focus the impact Kingsley, E. P. (1987). Welcome to holland. teachers can have in the life of a child who retrieved January 30,2007 from faces such developmental and academic www.our-kids.org challenges. Lantin, B. (1997, September 16). Problem Most educators want to make a that is all in the mind: Clumsiness is a difference in a child’s life. However, in order symptom – as is poor handwriting – yet to effectively advocate for the child who dyspraxia often remains undiagnosed and struggles in the classroom, we must first untreated. The Daily Telegraph (London). educate ourselves about this often overlooked Retrieved January 23, 2007 from and misunderstood disability that affects a www.nldline.com. relatively large portion of the school population. Before we disengaged and National Institute of Neurological Disorders dismiss a child’s abilities, let’s examine the and Stroke. (2006). NINDS developmental possibility of a disability that can be dyspraxia information page. Washington, diagnosed and can be treated. What greater DC: US. Government Printing Office. legacy could we leave than to empower a Retrieved January 23, 2007 from person to reach their full potential? www.ninds.hih.gov

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About the Author: Debi Stansell is an ESOL teacher in Riverdale, Georgia. This article was written in her graduate program for Education Specialist in Early Child- hood Education at the University of West Georgia.