22q Educational Tools

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On March 15th, 2013 we asked the 22q community; "What tools have you used to help educate their childrens teachers about 22q Deletion Syndrome?" TONS of parents responded. The following is a list of the most commonly used resources based on those responses.

 

VIDEO: 22Q University Episode #1 "Striving For School Success"

VIDEO: 22Q University Webinar Episode #2 "Reducing Stress & Anxiety at Home and at School"

VIDEO: 22Q University Webinar Episode #3 "Understanding IEP's" 

BOOK: Educating a Child with Velo-Cardio Facial Syndrome –A Handbook for Parents and Professionals by Donna Cutler-Landsman

WEBSITE: 22q Deletion Syndrome At A Glance -Genetic Education Materials for School Success (GEMSS)

PRINTABLE MATERIALS:  Velo Cardo-Facial Syndrome/22q11.2 Deletion Syndrome -An introduction for Teachers and Carer Givers by VCFS Education Foundation

PRINATABLE MATERIALS: Educational Issues for Children with Chromosome 22q Deletion by UC Davis MIND Insititute

GENERAL INFO: General Suggestions for Helping 22qDS Children Learn by 22q Crew

GENERAL INFO: "Tips & Tricks for Getting Effective IEP's" by Wrightslaw

BOOK: Missing Genetic Pieces "Strategies for Living with VCFS" by Sherry Gomez

 

22q in the Classroom

An Overview for Parents

22q or 22q11.2 deletion syndrome is also referred to as VCFS, and/or DiGeorge syndrome.  22q is caused by a tiny missing piece of the 22nd chromosome.  This tiny missing portion of chromosome 22 can affect every system in the human body.  22q can be the cause of nearly 200 mild to serious health and developmental issues in children.  Fortunately most of the medical problems associated with 22q can be managed; it’s the cognitive, psychological, and social difficulties that present more of a challenge, especially in the classroom.  The biggest challenge many 22q kids face is that of education.

  1. Promote communication between family members and teachers
  2. Early completion and implementation of an IEP (Individualized Education Plan)
  3. Assist educators in understanding challenges faced by students with 22qDS
  4. Consider appropriate and effective education strategies and special services

Importance of an IEP

We recognize that IEP’s are an ever changing work in progress, just like the child they are created for.  Successful IEP’s require equal parts participation and contribution from both the parent and the teacher.  Some parents may find it helpful to utilize an advocate with experience communicating with educators and administrators.  However, advocates are not a necessity for parents eager to play an active and participatory role in their child’s individual education plan.

Although each child with 22q is affected in a unique way, most will require some type of special education services. Many will need assistance throughout their school years. It is critical that teachers to grasp just how different each child with 22q is, even from other children diagnosed with the same syndrome.  Due to this wide variability within the syndrome, every child’s strengths and weakness must be carefully assessed.  Having said that, here are a few pearls of wisdom about the areas we know to be regions of concern. (This list uses terms that educators are familiar with.)

Common Areas of Concern

  • Language – both receptive and expressive language
  • Visual-spatial skills & memory
  • Non-verbal processing
  • Abstract reasoning
  • Fine and gross motor skills
  • Executive and adaptive functioning
  • Social & emotional functioning, including high levels of anxiety
  • Complex verbal memory
  • Working & encoding memory
  • Reading comprehension

Studies show that kids with 22q experience anxiety in everyday situations, even though they might not show the typical signs of distress that teachers will recognize. This is largely based on the common language deficits shared by children with 22q.  These deficits make it more challenging for a teacher to identify anxiety that might be more obvious in other children who also requires IEP’s.  Both parents and teachers should vigilant in identifying underlying anxiety, and work jointly (in the home and at school) to address this common pitfall as partners in your child’s education process.

Relative Areas of Strengths

  • Simple, focused attention
  • Rote verbal learning and memory
  • Ability to remember well-encoded information
  • Spelling and grammar
  • Computer skills
  • Word processing speed
  • Kinesthetic abilities (such as dance or karate) However, low muscle tone is common.
  • Rhythm and musical talent
  • Willingness to learn

Considerations and Strategies to Consider

  • A direct approach to learning rather than a discovery-based approach
  • Rote memorization, repetition, and concrete examples
  • One-on-one or small group instruction
  • Several small tasks rather than large assignments or multiple directions
  • A structured environment with clear rules to follow
  • Computer assisted learning and keyboarding
  • Reading aloud and books on tape
  • Extra time for test taking. Oral tests, not written and not timed

Note:

A neuropsychological evaluation is the widely accepted method schools use to determine need of special education services. While this testing can offer assistance with IEP planning, the results describe impairments and can’t explain the mental processes the child is using. A growing number of cognitive experimentation studies are being done to further our knowledge and will hopefully make for better education of children with 22q11.2DS in the future. (Landsman, Simon)

  • IQ testing is not an accurate predictor of school performance in children with 22q11.2DS.
  • A low IQ score is not necessarily predictive of learning ability and should never be used as the sole reason to place a child in a restrictive classroom.
  • Learning is a life-long process. As a parent it’s advantageous to communicate with your child’s teachers frequently – and with your child – regarding progress at school. Student, teachers and parents are a team whose goal is helping your child reach his or her potential.
  • Know your rights and responsibilities
  • Do your best to build a strong relationship with your child’s teacher
  • Strive to create a great relationship with the school

If you’re feeling overwhelmed, reach out to the 22q community for support. You are not alone! Click Here *Insert link to PDF found under “22q for Teachers” Tab* for a Teacher’s Guide to 22q

Sources and Resources

Educating Children with Velo-Cardio-Facial Syndrome (also known as 22q11.2 Deletion Syndrome and DiGeorge Syndrome) Second Edition. Donna Cutler-Landsman. Plural Publishing, Inc. 2013.
http://www.vcfsef.org/about_vcfs/educating_child.html
Educational Issues for Children with Chromosome 22q11.2 deletion
http://www.ucdmc.ucdavis.edu/mindinstitute/research/cabil/presentations/...
22q Deletion Velo-Cardio Facial Syndrome At a Glance
http://www.gemssforschools.org/Libraries/PDFs_for_printing/printable_22q...
Genetic Education Materials for School Success (GEMSS)-22q Deletion Velocardiofacial At a Glance http://www.gemssforschools.org/conditions/22q-deletion-velocardiofacial/...
Strategies for School Success with 22q/VCFS/DiGeorge
http://www.elwyngenetics.org/DCL.pdf
Missing Genetic Pieces “Strategies for Living with VCFS by Sherry Gomez http://books.google.com/books?id=BbrgJwtlX0sC&pg=PA145&lpg=PA145&dq=22q+...
Velo-Cardio facial Syndrome/22q11.2 Deletion Syndrome -An Introduction for Teachers & Caregivers http://www.vcfsfa.org.au/media/PDF7%20Teachers%20&%20Carers%20Guide.pdf
Wrights Law http://www.wrightslaw.com/

Academic articles

Angkustsiri, K., Tartaglia, N.R., Leckliter, I., Enriquez, J., Hansen, R.L., Beaton, E.A., Simon, T.J.(2012) An examination of the relationship of anxiety and intelligence to adaptive functioning of children with chromosome 22q11.2 deletion syndrome. Journal of Development and Behavioral Pediatrics. 33, 713-720. DOI: 10.1097/DBP.0b013e318272dd24
Stoddard, J., Beckett, L., Simon, T.J. (2011) Atypical development of the executive attention network in children with chromosome 22q11.2 deletion syndrome. Journal of Neurodevelopmental Disorders. 3, 76-85.
Beaton, E.A. & Simon, T.J. (2011) How might stress contribute to increased risk for schizophrenia in children with chromosome 22q11.2 deletion syndrome? Journal of Neurodevelopmental Disorders. 3, 68-75.
Simon, T.J., Takarae, Y., DeBoer, T.L., McDonald-McGinn, D.M., Zackai, E.H., Ross, J.L. (2008) Overlapping Numerical Cognition Impairments In Children With Chromosome 22q11.2 Deletion Or Turner Syndromes. Neuropsychologia, 46, 82-94.
Simon, T.J., Bearden, C.E., McDonald-McGinn, D., & Zackai, E. (2005) Visuospatial and numerical cognitive deficits in children with Chromosome 22q11.2 Deletion Syndrome. Cortex, 41: 131-141.
Simon, T.J., Bish, J.P., Bearden, C.E., Ferrante, S., Ding, L., Nguyen, V., Gee, J., McDonald-McGinn, D., Zackai, E.H.,& Emanuel, B. (2005) A multi-level analysis of cognitive dysfunction and psychopathology associated with chromosome 22q11.2 deletion syndrome in children. Development and Psychopathology. 17, 753-784.

 

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