What you need to know
It is important to have HIGH LEARNING EXPECTATIONS for children who have 22q Deletion. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.
- Most children (90%) with 22q deletion experience some degree of developmental disability with delayed speech and language development as the most consistent feature.
- In formal standardized testing, most school aged children have a full scale IQ in the category of borderline intellectual disability (full scale IQ of 71-85).
- A school aged child with 22q deletion will typically have an unusual neuropsychological profile with a significantly higher verbal IQ than performance IQ with strengths and weaknesses suggestive of a nonverbal learning disorder.
- Common strengths
- Rote verbal learning and memory
- Reading, decoding and spelling
- Common difficulties
- Nonverbal processing
- Visual-spatial skills
- Complex verbal memory
- Working memory
- Visual-spatial memory
- Diagnosis of attention deficit disorder is common in 22q deletion.
- Attention to details but not the whole
- Problems with concentration on tasks
- Executive function difficulties affect planning, thinking flexibly and understanding abstract ideas.
- This may cause children to struggle to remember, process, and organize information efficiently.
- Executive function difficulties can cause problems in more complex math or in reading comprehension.
- May also affect social interactions because of the difficulty in planning and executing plans
Individuals with 22q deletion syndrome may have significant visuospatial dysfunction, diminished math attainment, and executive dysfunction.
- Deficits may be seen in areas of nonverbal processing, visual-spatial skills, complex verbal memory, attention, working memory, visual-spatial memory, and mathematics.
Math learning difficulties in 22q deletion include difficulties in understanding and representing quantities and in accessing the numerical meaning from symbolic digits.
- Individuals may show adequate fact retrieval while development of procedural strategies appears to be delayed.
- Word problems may be a significant area of weakness. They are challenging due to their procedural nature and difficulty in reading comprehension.
Motor and sensory abilities in children with 22q deletion syndrome may be delayed.
- Poor muscle development in children with 22q deletion syndrome may lead to delayed motor milestones.
- This can lead to coordination problems that can persist into adolescence. Children may find it difficult to perform tasks that require dexterity and control of movements.
- Children may struggle with visual information to guide their actions. They may find it difficult to perform tasks requiring spatial awareness.
- Copying down text is difficult, as it requires coordination and the ability to hold information in memory for the short term.
Speech and language development is delayed in the majority of children with 22q deletion syndrome. This may be due in part to structural differences such as a cleft palate (a hole in the roof of the mouth) or to functional difficulties (either VPI or oral apraxia).
- Hypernasal speech is common (75%).
- Excessively nasal speech due to velopharyngeal incompetence (VPI)
- VPI is a condition in which the soft palate does not close properly and the oral cavity is not closed off completely from the nasal cavity during speech.
- Some children with VPI experience nasal regurgitation in which food and drink comes out the nose.
- Remediation of VPI requires specific referral to a specialist from your primary care physician
- Articulation disorders
- May be compensatory
- May be due to oral apraxia (inability to coordinate facial and lip movements) or dysarthria (weakness of oral muscles)
- Slow vocabulary growth and difficulty in forming complex sentences is also common.
Consider an IEP or 504 plan in order to address the educational challenges in a more individualized manner. Click here for our in depth IEP/504 page. Structure and routine can help reduce anxiety. Visual reminders may help with verbal/auditory learning and reduce frustration.
Be alert for warning signs of problems:
- Late or missing assignments
- Unfinished work
- Work attempted, but done incorrectly
- Quietness in class – lack of questions
- Difficulty retelling a story
- Social or behavioral problems
- Repeatedly using verbal instructions
- Break down instructions into clear steps
- Use a tape recorder while reading to the class
- Allow student to use a word bank on a test to help with recall
- Teach a system of remembering assignments using a chart and/or an assignment book
- Provide a template for complex or multistep problems; break down the steps
- Help teach the concepts of numeracy and the associations between numbers and quantities. For example using a board game in which the playing pieces are moved around a board.
- Line up the numbers for calculations
- Use active learning to teach concepts, such as baking or cooking to teach fractions
- Help the child learn to apply the information in new circumstances
- Occupational, speech and physical therapy may be helpful for motor development, feeding and swallowing, etc.
- Visual instruction may work better than verbal.
- Limit written homework.
- It is important to rule in/out developmental motor speech disorder. This includes:
- childhood apraxia of speech which is a motor planning problem
- developmental dysarthria which is a motor execution problem.
- The diagnosis and the treatment of speech and language problems are challenging. Many different factors may be involved. However, remediation has led to excellent prognosis in a large majority of cases.
- As a result of nasal regurgitation, the child may experience more nasal infections. This gap between the velum and pharynx (area in the back of the throat) may also lead to difficulty swallowing, or dysphagia. It is important to remember that feeding may be a challenge for these children, and they may tire easily during mealtimes. A pediatric speech pathologist will be helpful if feeding is a concern. A speech language pathologist will work with the family to ensure swallow safety, implement feeding techniques, and reduce the risk of pulmonary complications.
- For more information on speech-language disorders, click here.
- You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.