Apert Syndrome

Christina O'Neill

Strategies for the Classroom

Treatment

Treatment for children with Apert syndrome involves a team based approach. Specialists on this team often include a craniofacial surgeon, neurosurgeon, ENT, SLP, psychologist, audiologist, and an orthodontist (Sears & Sears, n.d.). The team may involve other professionals and also involves the child’s family. The child's outcomes are significantly dependent on their family/caregiver commitment to playing a role in this team. The team works together to find the best plan and strategies for the child’s daily life that can ultimately enhance their quality of life. Strategies for the child’s classroom and home are developed based on their specific needs and the resources that are available.


The treatment of patients with Apert syndrome is not uniform because of the significant variation in facial anomalies, age of the patients, and previous corrections/surgeries (Aggarwal, Singh & Kumar, 2014). It is also important to keep in mind that when treating a child with this disorder, treatment should be tailored toward's the child's personality, interests and their family needs (Elleseff, 2014).


School

Children with Apert Syndrome may either be in a mainstream classroom or a special education classroom. If a child with developmental/cognitive delays is in a mainstream classroom, they should receive special education services through individual support from a classroom assistant (Shipster, Hearst, Dockrell, Kilby & Hayward 2002). If a child has an aid in the classroom, it is important that the teacher collaborates with and regularly speaks with them. They should discuss the curriculum, strategies that are being used, and how the child is doing to see whether anything needs to be altered in order to bring them the most success. Below is a list of suggestions for school, however keep in mind that these are just a few of the possible strategies that could be used. Depending on the student's needs, the teacher/aid may need to incorporate a variety of other strategies to help the child reach their full potential.


Suggested Strategies for School:

  • Have the child sit in the front of the classroom to hear better and have less distractions.
  • If the child has some degree of hearing loss the teacher can speak into a microphone to amplify her speech and make it easier for the child to hear.
  • Provide additional supports in the classroom. Examples include visuals on the child's desk, graphic organizers or first/then boards to use during a lesson, preparing the child beforehand on what they will be doing in class/during that activity, and offering additional help before/after class.
  • Children with Apert Syndrome have been said to have specific weaknesses on arithmetic and memory tasks so the teacher can make sure to provide supports during any of these activities (Sarimski, 2001). For example, the teacher can provide additional visuals for the student during memory tasks. The teacher may also offer additional help before/after school for the child to receive more practice and support with these areas.
  • Because children with Apert Syndrome sometimes experience psychosocial issues due to their facial anomalies and related symptoms, it is important to encourage social interactions among the child and their peers. The teacher can do this by assigning group work where they have to work with peers to complete an assignment and/or group activities in which they can interact in less structured situations.


Student with Apert Syndrome: https://www.youtube.com/watch?v=HsXvgPeTdAo

Strategies for Home

It is important for the child’s family/caregiver(s) to play a present and supportive role throughout their life.The child will need this support through various surgeries, physical/developmental changes, academic development, and social changes. A significant factor that directly influences the mental development of those with Apert Syndrome is the quality of the family environment that they are in and the amount of knowledge the parent/caregiver has on the disorder (Yacubian-Fernandes et. al, 2005). The home environment should be tailored to the child's specific needs, and support from the family as well as a positive atmosphere will be beneficial in enhancing quality of life. Below is a list of suggestions that can be implemented at home. Keep in mind that each child is different and that other strategies may need to be implemented to bring the child the most success.


Suggestions for Home:

  • Provide support by using visual schedules as reminders for the child if they have memory deficits.
  • If the child is receiving speech therapy and articulation is one of their goals, the family/caregiver(s) can provide appropriate feedback throughout the day to help carry over what is being done in therapy to their lives outside of therapy.
  • If the child is deaf or hearing impaired, the family should learn sign language and/or create a method of communication that works for the child in order for the child/family to be able to successfully communicate.
  • Depending on the child's cognitive level, their language may be delayed. If this is the case, the family/caregiver will want to make their home a language rich environment where there is plenty of opportunities to use language (toys, books, visuals, etc.). To be involved and supportive through the child's development, the family/caregiver(s) should be knowledgeable on ways to increase language and should implement these strategies on a daily basis (shared storybook reading, pretend play, etc.).


Supporting your Child: https://www.youtube.com/watch?v=hH-TpByz_fU

Tools for the SLP

A Speech-Language Pathologist must make sure to assess hearing, expressive/receptive language, and articulation/phonology with a child with Apert’s. These children tend to have difficulties in at least one of these areas, and almost always with hearing. Most often, the child’s hearing problems will influence their speech and language skills, so referral to an audiologist would be beneficial for the child.


An SLP working with a child with Apert Syndrome should have an understanding of the common speech/language difficulties these children present with. Below is a general list of what an SLP should look at when beginning treatment:

  • Articulation - Alveolar consonants /s, z, t, d/ and labiodental sounds /f, v/
  • Language = Deficits vary based off of cognitive level, hearing status and timing/degree of surgical treatment
  • Oral Motor = Arched high palate, irregular dentition, malocclusion, and forward posture with the tongue
  • Feeding & Swallowing = Most commonly addressed in treatment with these children if they have concurrent gastrointestinal issues which require early tube-feeding

(Elleseff, 2014)


When determining the appropriate treatment plan for any child, it is important to get an idea of their skills across multiple areas of speech and language. Therefore, completing an oral motor mechanism exam, receptive/expressive language and articulation assessment will provide the SLP with an understanding of their strengths/weaknesses. The oral motor mechanism exam will provide the SLP with information regarding their oral motor structures and functions. If the deficits noted above for oral motor are observed, the child's articulation will most likely be affected which makes completing an articulation assessment important.


Having knowledge on all of these areas of speech and language will help to gear therapy toward their individual needs. Below is a list of assessments that could be used when evaluating and beginning treatment for these children.

  • Expressive Vocabulary Test-2 (EVT-2)

  • Peabody Picture Vocabulary Test-4 (PPVT-4)

  • Goldman Fristoe Test of Articulation-2 (GFTA-2)

  • Clinical Assessment of Articulation and Phonology-2 (CAAP-2)

  • Preschool Language Scale-5 (PLS-5)
  • Oral Speech Mechanism Screening Examination (OSMSE)


Suggestions for Therapy:

Below is a list of therapy ideas that could be used to target the possible needs of these children.

  • Articulation: Activities that could be used to target the sound(s) the child has a hard time with could be flashcards, BINGO, board games, books, etc. All of these activities would be target sound(s) specific. If the child presents with the use of phonological processes, the SLP can use similar activities to target the specific speech sound error(s) that the child presents with. An example of one phonological process activity is to use sentence strips for final consonant deletion. The child fills in one word and then has to say the entire sentence. The words used in the activity will end in the target sound to practice keeping the final consonant on the word.


  • Language: Activities that could be used to enhance the child's language skills include shared storybook reading, Spot the Difference Pictures, pretend play, crafts, etc. If expressive language is an area of concern the SLP may implement a pacing board to help increase utterance length. The SLP should also provide a lot of modeling and opportunities for the child to use their language during the therapy session.