Apraxia Awareness Day - Helping Kids Find Their Voices

https://www.apraxia-kids.org/

Rossville mom spreads awareness

about a childhood speech disorder, and

the borough president helps out

article link

by Carol Ann Benanti | benanti@siadvance.com

Updated: May. 11, 2022

Published: May. 10, 2022

Emma Rose Kelly, her mom, Caroline Kelly -- and a friend.
(Courtesy/Caroline Kelly) Staten Island Advance

STATEN ISLAND, N.Y. — As parents of young Emma Rose Kelly, a 3-year-old diagnosed with Childhood Apraxia, a motor speech disorder, Caroline and Conor Kelly continue to spread awareness.

The condition makes it difficult to plan movements of the lips, tongue and jaw. The disorder becomes apparent as a child is learning to speak.

And since May is Apraxia Awareness Month, and Caroline is a volunteer for Apraxia Kids, this time of year presents the perfect opportunity to bring awareness to Staten Island about Childhood Apraxia of Speech (CAS).

“I met with the new borough president and BP Vito Fossella obtained a proclamation recognizing May as Apraxia Awareness Month on Staten Island,” said Caroline, who added this is the second year it’s being recognized and celebrated.

Caroline Kelly received a Proclamation from Borough President
Vito Fossella for Apraxia Awareness Day.
(Courtesy/Caroline Kelly) Staten Island Advance

“And by designating that day, it’s a way to have more people become aware of the disorder.”

Caroline, a registered nurse, and husband Conor, a firefighter on Staten Island, explained Apraxia is often misdiagnosed because of its relative rarity, where frequent, intensive speech therapy focuses on the principles of motor learning — and is the only treatment.

Carolilne Kelly and her daughter, Emma Rose Kelly.
(Courtesy/Caroline Kelly) Staten Island Advance

Since it’s uncommon, it’s difficult to find professionals trained to diagnose and treat Apraxia.

The couple has seen the struggle and they say it’s often hard to try to explain the condition to others. And when COVID-19 was raging, therapies for Apraxia were put on hold.

Emma Rose and Caroline Kelly. (Courtesy/Caroline Kelly) Staten Island Advance

The couple’s daughter, who’ll turn 4 in August, was diagnosed with the disorder just after she turned 2.

Emma Rose attends Children at Play Intervention Center, an early intervention center and pre-school with special intervention teachers in Bulls Head that provides children with speech language therapy in an environment where learning new skills can be fun and enjoyable.

Five times each week, Emma Rose receives private instruction where she’s given intensive private speech therapy, Caroline adds.

The school translates into a pediatric family centered private therapy clinic that offers a number of treatment approaches and sensory-based activities that helps promote child development.

Emma Rose Kelly. (Courtesy/Caroline Kelly) Staten Island Advance

“Emma Rose receives physical therapy and occupational therapy at her school and she just loves it,” said Caroline. “It’s just amazing.”

“On May 12 the school is celebrating Apraxia Awareness Day with a party where there will be catered food and cake pops, special shirts made for teachers and therapists, and special activities for the kids and where they will acknowledge the proclamation from Borough President Vito Fossella,” Caroline adds.

“I’ve continued to connect with Staten Island parents who have learned that their child might have Apraxia, or have received a diagnosis of Apraxia, and I’ve been helping them navigate their journey,” she added. “I help them with resources, mainly from Apraxia-kids.org, finding therapists, and support. Every day I get new messages online with parents asking for help, as they feel overwhelmed and don’t know what to do. I get to hear stories from local parents, learn a little bit about their life, and connect over Apraxia. They’re so thankful and appreciative. It’s time consuming, on top of being a nurse and a mom, but it brings me a sense of fulfillment helping others.”

Caroline & Emma Rose Kelly. (Courtesy/Caroline Kelly)
Staten Island Advance

She adds Emma Rose is doing well. “She loves her school and is thriving. Thankfully due to early intervention, and being proactive she is going to have a great life and be the best version of herself.”

The Kellys will continue to keep sharing information about Apraxia on social media on an account called Apraxia Awareness, where Caroline where other parents continue to reach out.

Emma Rose Kelly. (Courtesy/Caroline Kelly) Staten Island Advance

Over the last 10 years, Staten Island had participated in successful Apraxia Awareness Walks and the Kellys hope to continue the tradition.

A FEW FACTS ABOUT APRAXIA

Children with apraxia of speech predominately have an age appropriate understanding of language. They know what they want to say but have difficulty learning or performing the complex movements that underlie speech. It’s one of the most severe childhood speech and communication disorders occurring in approximately 1 in 1,000 children.

“Speech and communication are critical skills for young children and they along with their families need support to develop these skills as they will not outgrow this disorder,” Caroline added. “Apraxia impacts my daughter and her relationship with peers as communication is not easy for her. She faces challenges every day in ways not everyone can understand. And I know more kids in our community suffer with these obstacles as well.”

The only proven treatment for CAS is intensive speech therapy, which is costly as it extends over a number of years.

• To learn more about apraxia visit www.apraxia-kids.org.

• Apraxia Kids is a 501(c)(3) nonprofit publicly funded charity whose mission is to strengthen the support systems in the lives of children with apraxia so that each child is afforded their best opportunity to develop speech and communication

• Those interested in volunteering or in learning more about Apraxia and advocacy programs should email Caroline at carolinemhartley@gmail.com

* * * * * * * *

https://www.apraxia-kids.org/

HELPING KIDS FIND THEIR VOICES

WHAT IS CHILDHOOD APRAXIA OF SPEECH?

Childhood apraxia of speech (CAS) is a motor speech disorder that makes it difficult for children to speak. Children with the diagnosis of apraxia of speech generally have a good understanding of language and know what they want to say. However, they have difficulty learning or carrying out the complex sequenced movements that are necessary for intelligible speech.

* * * * * * * *

APRAXIA

From Wikipedia, the free encyclopedia

Jump to navigationJump to search

Apraxia
Apraxia is characterized by loss of the ability to execute or carry out learned purposeful movements
Specialty	Neurology, Psychiatry
Treatment	Occupational therapy Physical therapy

Apraxia is a motor disorder caused by damage to the brain (specifically the posterior parietal cortex or corpus callosum^[1]) which causes difficulty with motor planning to perform tasks or movements. The nature of the damage determines the disorder's severity, and the absence of sensory loss or paralysis helps to explain the level of difficulty.^[2] Children may be born with apraxia; its cause is unknown, and symptoms are usually noticed in the early stages of development. Apraxia occurring later in life, known as acquired apraxia, is typically caused by traumatic brain injury, stroke, dementia, Alzheimer's disease, brain tumor, or other neurodegenerative disorders.^[3] There are multiple types of apraxia, categorized by the specific ability and/or body part affected.

The term apraxia comes from the Greek ἀ- a- ("without") and πρᾶξις praxis ("action").^[4]

Types

There are several types of apraxia including:

• Apraxia of speech (AOS): Difficulty planning and coordinating the movements necessary for speech (e.g. Potato=Totapo, Topato).^[5] AOS can independently occur without issues in areas such as verbal comprehension, reading comprehension, writing, articulation or prosody.^[6]
• Buccofacial or orofacial apraxia: This is the most common type of apraxia and is the inability to carry out facial movements on demand. For example, an inability to lick one's lips, wink, or whistle when requested to do so. This suggests an inability to carry out volitional movements of the tongue, cheeks, lips, pharynx, or larynx on command.^[7][8]
• Constructional apraxia: The inability to draw, construct, or copy simple configurations, such as intersecting shapes. These patients have difficulty copying a simple diagram or drawing basic shapes.^[7]
• Gait apraxia: The loss of ability to have normal function of the lower limbs such as walking. This is not due to loss of motor or sensory functions.^[9]
• Ideational/conceptual apraxia: Patients have an inability to conceptualize a task and impaired ability to complete multistep actions. This form of apraxia consists of an inability to select and carry out an appropriate motor program. For example, the patient may complete actions in incorrect orders, such as buttering bread before putting it in the toaster, or putting on shoes before putting on socks. There is also a loss of ability to voluntarily perform a learned task when given the necessary objects or tools. For instance, if given a screwdriver, the patient may try to write with it as if it were a pen, or try to comb their hair with a toothbrush.^[10][11]
• Ideomotor apraxia: These patients have deficits in their ability to plan or complete motor actions that rely on semantic memory. They are able to explain how to perform an action, but unable to "imagine" or act out a movement such as "pretend to brush your teeth" or "pucker as though you bit into a sour lemon." However, when the ability to perform an action automatically when cued remains intact, this is known as automatic-voluntary dissociation. For example, they may not be able to pick up a phone when asked to do so, but can perform the action without thinking when the phone rings.^[10][11]
• Limb-kinetic apraxia: The inability to perform precise, voluntary movements of extremities. For example, a person affected by limb apraxia may have difficulty waving hello, tying their shoes, or typing on a computer.^[12][8] This type is common in patients who have experienced a stroke, some type of brain trauma, or have Alzheimer disease.^[13]
• Oculomotor apraxia: Difficulty moving the eye on command, especially with saccade movements that direct the gaze to targets. This is one of the 3 major components of Balint's syndrome.^[8]

Causes

Apraxia is most often due to a lesion located in the dominant (usually left) hemisphere of the brain, typically in the frontal and parietal lobes. Lesions may be due to stroke, acquired brain injuries, or neurodegenerative diseases such as Alzheimer's disease or other dementias, Parkinson's disease, or Huntington's disease. It is also possible for apraxia to be caused by lesions in other areas of the brain.^[11]

Ideomotor apraxia is typically due to a decrease in blood flow to the dominant hemisphere of the brain and particularly the parietal and premotor areas. It is frequently seen in patients with corticobasal degeneration.^[11]

Ideational apraxia has been observed in patients with lesions in the dominant hemisphere near areas associated with aphasia; however, more research is needed on ideational apraxia due to brain lesions. The localization of lesions in areas of the frontal and temporal lobes would provide explanation for the difficulty in motor planning seen in ideational apraxia as well as its difficulty to distinguish it from certain aphasias.^[14]

Constructional apraxia is often caused by lesions of the inferior non-dominant parietal lobe, and can be caused by brain injury, illness, tumor or other condition that can result in a brain lesion.^[14]

Diagnosis

Although qualitative and quantitative studies exist, there is little consensus on the proper method to assess for apraxia. The criticisms of past methods include failure to meet standard psychometric properties as well as research-specific designs that translate poorly to non-research use.^[15]

The Test to Measure Upper Limb Apraxia (TULIA) is one method of determining upper limb apraxia through the qualitative and quantitative assessment of gesture production. In contrast to previous publications on apraxic assessment, the reliability and validity of TULIA was thoroughly investigated.^[16] The TULIA consists of subtests for the imitation and pantomime of non-symbolic (“put your index finger on top of your nose”), intransitive (“wave goodbye”) and transitive (“show me how to use a hammer”) gestures.^[15] Discrimination (differentiating between well- and poorly performed tasks) and recognition (indicating which object corresponds to a pantomimed gesture) tasks are also often tested for a full apraxia evaluation.^{[citation needed]}

However, there may not be a strong correlation between formal test results and actual performance in everyday functioning or activities of daily living (ADLs). A comprehensive assessment of apraxia should include formal testing, standardized measurements of ADLs, observation of daily routines, self-report questionnaires and targeted interviews with the patients and their relatives.^[15]

As stated above, apraxia should not be confused with aphasia (the inability to understand language); however, they frequently occur together. It has been stated that apraxia is so often accompanied by aphasia that many believe that if a person displays AOS then it should be assumed that the patient also has some level of aphasia.^[17]

Treatment

Treatment for individuals with apraxia includes speech therapy, occupational therapy, and physical therapy.^[18] Currently there are no medications indicated for the treatment of apraxia, only therapy treatments.^[19] Generally, treatments for apraxia have received little attention for several reasons, including the tendency for the condition to resolve spontaneously in acute cases. Additionally, the very nature of the automatic-voluntary dissociation of motor abilities that defines apraxia means that patients may still be able to automatically perform activities if cued to do so in daily life. Nevertheless, research shows that patients experiencing apraxia have less functional independence in their daily lives,^[20] and that evidence for the treatment of apraxia is scarce.^[21] However, a literature review of apraxia treatment to date reveals that although the field is in its early stages of treatment design, certain aspects can be included to treat apraxia.^[22]

One method is through rehabilitative treatment, which has been found to positively impact apraxia, as well as activities of daily living.^[22] In this review, rehabilitative treatment consisted of 12 different contextual cues, which were used in order to teach patients how to produce the same gesture under different contextual situations.^[22] Additional studies have also recommended varying forms of gesture therapy, whereby the patient is instructed to make gestures (either using objects or symbolically meaningful and non-meaningful gestures) with progressively less cuing from the therapist.^[23] It may be necessary for patients with apraxia to use a form of alternative and augmentative communication depending on the severity of the disorder. In addition to using gestures as mentioned, patients can also use communication boards or more sophisticated electronic devices if needed.^[24]

No single type of therapy or approach has been proven as the best way to treat a patient with apraxia, since each patient's case varies. However, one-on-one sessions usually work the best, with the support of family members and friends. Since everyone responds to therapy differently, some patients will make significant improvements, while others will make less progress.^[25] The overall goal for treatment of apraxia is to treat the motor plans for speech, not treating at the phoneme (sound) level. Research suggests that individuals with apraxia of speech should receive treatment that focuses on the repetition of target words and rate of speech. Research rerouted that the overall goal for treatment of apraxia should be to improve speech intelligibility, rate of speech and articulation of targeted words.^[26]

Prognosis

The prognosis for individuals with apraxia varies. With therapy, some patients improve significantly, while others may show very little improvement. Some individuals with apraxia may benefit from the use of a communication aid. However, many people with apraxia are no longer able to be independent. Those with limb-kinetic and/or gait apraxia should avoid activities in which they might injure themselves or others.^{[citation needed]}

Occupational therapy, physical therapy, and play therapy may be considered as other references to support patients with apraxia. These team members could work along with the SLP to provide the best therapy for people with apraxia. However, because people with limb apraxia may have trouble directing their motor movements, occupational therapy for stroke or other brain injury can be difficult.^{[citation needed]}

No medication has been shown useful for treating apraxia.^{[citation needed]}

See also

• Praxis (process)
• Aging movement control
• Developmental coordination disorder
• Lists of language disorders

References

1. ^ Zeidman, Lawrence A. (2020). Brain Science Under the Swastika: Ethical Violations, Resistance, and Victimization of Neuroscientists in Nazi Europe. Oxford University Press. p. 36. ISBN 978-0-19-872863-4.
2. ^ ASHA
3. ^ "Apraxia: MedlinePlus Medical Encyclopedia". medlineplus.gov. Retrieved 2019-08-07.
4. ^ "Definition of APRAXIA". www.merriam-webster.com. Retrieved 2017-05-02.
5. ^ Heilman KM, Watson RT, Gonzalez-Rothi LJ. Praxis. In: Goetz CG. Goetz: Textbook of Clinical Neurology. 3rd ed. Philadelphia, PA: Saunders Elsevier; 2007:chap 4.
6. ^ Duffy, Joseph R. (2013). Motor Speech Disorders: Substrates, Differential Diagnosis, and Management. St. Louis, MO: Elsevier. p. 269. ISBN 978-0-323-07200-7.
7. ^ Jump up to:^a b "Apraxia". NORD (National Organization for Rare Disorders). Retrieved 2019-08-02.
8. ^ Jump up to:^a b c "Apraxia Information Page | National Institute of Neurological Disorders and Stroke". www.ninds.nih.gov. 2019. Retrieved 2019-08-01.
9. ^ Nadeau SE (2007). "Gait apraxia: further clues to localization". Eur. Neurol. 58 (3): 142–5. doi:10.1159/000104714. PMID 17622719. S2CID 40700537.
10. ^ Jump up to:^a b Sathian, K; et al. (Jun 2011). "Neurological principles and rehabilitation of action disorders: common clinical deficits". Neurorehabilitation and Neural Repair. 25 (5): 21S–32S. doi:10.1177/1545968311410941. PMC 4139495. PMID 21613535.
11. ^ Jump up to:^a b c d Gross, RG; Grossman, M. (Nov 2008). "Update on apraxia". Current Neurology and Neuroscience Reports. 8 (6): 490–496. doi:10.1007/s11910-008-0078-y. PMC 2696397. PMID 18957186.
12. ^ Treatment Resource Manual for Speech Pathology 5th edition
13. ^ Foundas, Anne L. (2013-01-01), Barnes, Michael P.; Good, David C. (eds.), "Chapter 28 - Apraxia: neural mechanisms and functional recovery", Handbook of Clinical Neurology, Neurological Rehabilitation, Elsevier, vol. 110, pp. 335–345, retrieved 2019-08-07
14. ^ Jump up to:^a b Tonkonogy, Joseph & Puente, Antonio (2009). Localization of clinical syndromes in neuropsychology and neuroscience. Springer Publishing Company. pp. 291–323. ISBN 978-0826119674.
15. ^ Jump up to:^a b c Vanbellingen, T.; Bohlhalter, S. (2011). "Apraxia in neurorehabilitation: Classification, assessment and treatment". NeuroRehabilitation. 28 (2): 91–98. doi:10.3233/NRE-2011-0637. PMID 21447909.
16. ^ Vanbellingen, T.; Kersten, B.; Van Hemelrijk, B.; Van de Winckel, A.L.J.; Bertschi, M.; Muri, R.; De Weerdt, W.; Bohlhalter, S. (2010). "Comprehensive assessment of gesture production: a new test to measure upper limb apraxia". European Journal of Neurology. 17 (1): 59–66. doi:10.1111/j.1468-1331.2009.02741.x. PMID 19614961.
17. ^ (Manasco, 2014)
18. ^ "NINDS Apraxia Information Page". Retrieved 8 March 2012.
19. ^ Worthington, Andrew (2016). "Treatments and technologies in the rehabilitation of apraxia and action disorganisation syndrome: A review". NeuroRehabilitation. 39 (1): 163–174. doi:10.3233/NRE-161348. ISSN 1053-8135. PMC 4942853. PMID 27314872.
20. ^ Hanna-Pladdy, B; Heilman, K.M.; Foundas, A.L. (Feb 2003). "Ecological implications of ideomotor apraxia: evidence from physical activities of daily living". Neurology. 60 (3): 487–490. doi:10.1212/wnl.60.3.487. PMID 12578932. S2CID 23836106.
21. ^ West, C; Bowen, A.; Hesketh, A.; Vail, A. (Jan 2008). "Interventions for motor apraxia following stroke". Cochrane Database of Systematic Reviews. 23 (1): CD004132. doi:10.1002/14651858.CD004132.pub2. PMC 6464830. PMID 18254038.
22. ^ Jump up to:^a b c Buxbaum LJ, Haaland KY, Hallett M, et al. (February 2008). "Treatment of limb apraxia: moving forward to improved action" (PDF). Am J Phys Med Rehabil. 87 (2): 149–61. doi:10.1097/PHM.0b013e31815e6727. PMID 18209511.
23. ^ Smania, N; et al. (Dec 2006). "Rehabilitation of limb apraxia improves daily life activities in patients with stroke". Neurology. 67 (11): 2050–2052. doi:10.1212/01.wnl.0000247279.63483.1f. PMID 17159119. S2CID 4456810.
24. ^ "ASHA, Apraxia of Speech in Adults".
25. ^ Dovern, A.; Fink, GR.; Weiss, PH. (Jul 2012). "Diagnosis and treatment of upper limb apraxia". J Neurol. 259 (7): 1269–83. doi:10.1007/s00415-011-6336-y. PMC 3390701. PMID 22215235.
26. ^ Wambaugh, JL; Nessler, C; Cameron, R; Mauszycki, SC (2012). "Acquired apraxia of speech: the effects of repeated practice and rate/rhythm control treatments on sound production accuracy". American Journal of Speech-Language Pathology. 21 (2): S5–S27. doi:10.1044/1058-0360(2011/11-0102). PMID 22230177.

Further reading

• Kasper, D.L.; Braunwald, E.; Fauci, A.S.; Hauser, S.L.; Longo, D.L.; Jameson, J.L.. Harrison's Principles of Internal Medicine. New York: McGraw-Hill, 2005. ISBN 0-07-139140-1.
• Manasco, H. (2014). Introduction to Neurogenic Communication Disorders. Jones & Bartlett Publishers.

External links

• Acquired Apraxia of Speech: A Treatment Overview
• Apraxia: Symptoms, Causes, Tests, Treatments
• ApraxiaKids
• GettingTheWordOutOnApraxia.com: A Community for Parents of Children with Apraxia