It is important to note that a child's education, extends beyond learning the curriculum. It includes social skills and the ways they learn to interact with each other which will stay with them into adulthood. It is also easy to overlook the emotional process of education (growing-up).
The way each child is affected by the 22q11.2 deletion varies widely; so every child will not exhibit all of the traits noted here, but some will be seen in most of the children.
Problems with education and schooling are probably the most common areas that parents experience. It is generally noted that GP's do not have an awareness of the deletion and therefore it should not be surprising that educational professionals are also not aware of the features of a 22q11.2 deletion and most schools will need to be provided with information.
It is vital that every child is monitored and that any signs of difficulty are identified early on and the appropriate intervention given. Whatever the child's difficulties there are ways of encouraging and supporting learning.
Parental support is essential, along with tutoring and extra help to make the most of their educational experiences. Occupational therapy is important for fine motor skills.
- • In the early years the main areas of difficulty relate to speech and medical problems.
- • As the children get older, the gap between their achievements and abilities and those of their peers widens, i.e. they fall further behind as they get older.
- • Abstract reasoning can be difficult; by the time they are 8/9 years of age, learning at school is abstract but they need to learn through concrete materials and experiences.
- • They think literally; so making inferences or phrases like "you're driving me up the wall" will be confusing and nonsensical.
- • They can watch what other people are doing and copy without understanding, so that problems in class may be masked.
- • The areas where children are most commonly noted to struggle are: English and comprehension, speech and expressive language skills; memory; auditory processing; fine/gross motor skills; complex maths; higher cognitive processes such as abstract reasoning and problem solving.
- • Strengths often include: maths calculations; rote memory; spelling and written language; decoding words and reading basic information; pleasant personality and willingness to learn.
Frequently reported parental observations:
- • There may be difficulties with large group presentations, note-taking and gaining information from video.
- • They may not be able to recall information without learned cues; they need to be taught memory techniques; constant repetition and reinforcement is frequently needed.
- • Remembering multi-step directions is often difficult.
- • They often have difficulty with time concepts, and shape, colour and size. Also even older children may find money and 'value' of coins a mystery.
- • They can have disorganised thinking and become obsessed with one topic or idea. Leading to some children being diagnosed with Asperger's syndrome). Though this diagnosis is often helpful in obtaining practical help in the classroom!
- • A timetable to organise the day at school helps and can be good at home too.
- • It is usually noted that the children have poor performance compared to their assessed IQ.
- • They may learn more readily through computer-based programmes where there can be lots of repetition and no person-to-person variables.
- They may be socially immature and this is often related to language delay. They need to be shown a pattern that they can apply - they won't understand the pattern but they can apply it
- They may be very easily lead into doing wrong things because they want friends, they follow the crowd.
- They have obsessive behaviours and autistic type behaviours e.g. focusing on a tiny part of an object/picture/situation which is not important.
- In puberty they may have difficulties with socialisation, understanding tasks, hygiene, social communication interaction i.e. they need help screening language, emotional problems and self-esteem, all of these could affect their education.
- They tend to get on with younger ones or older ones who will mother them.
- They often have poor social skills within a peer group, immature or inappropriate behaviour patterns, hyperactivity, impulsiveness, be overly gullible and suffer from mood swings.
- Children are often noted as having low self-esteem and a lack confidence. They often perform better when one to one with an adult whom they are familiar and confident with; they often 'give up' at the slightest set back.
- They are often easily frustrated and distracted from the task in hand.
- They have difficulty with oral language e.g. asking a question - they can not verbalise the information that they want to know. They may say "Your mum's dead..." but mean something different; they are not able to find the correct words or put them together.
- They may say "I can't do this" when they mean "Could you help me with section 3?"
- They have a lack of expression shown on their face (poor muscle tone) and they lack a 'puzzled expression'.
- The 22q11.2 deletion is a communication disorder which can easily affect education.
- Problems with anxiety and mood swings may be noted.
- Self-esteem - they need careful handling especially as teenagers.
- They get upset at what people say; especially if they laugh at them and this may lead to depression.
- Any signs of depression need to be handled sensitively.
- From puberty onwards some (but NOT all) children have a tendency towards manic depression. A recent study found that a percentage of people with schizophrenia had the deletion.
- Most of the children who experience difficulty at school will require help at home and co-operation from school.
- Small group instruction or individual help within the main classroom is beneficial.
- Handouts or notes could be provided to the student before tests.
- Opportunities could be given to have tests taken with SENCO; or with a computer if writing is tiring; or to have extra time allowances; and opportunities to retake tests.
- The optimum teaching approach should be focused on direct instruction rather than a discovery approach to learning and to having material presented visually as well as verbally.
- Drill and practice activities are generally essential as are instructions on memory techniques and test taking skills.
- Benefit is gained from opportunities for creative projects.
- Keyboard use and access to computers helps due to the logical and linear/non-abstract process of computer learning and when fine motor skills are a problem.
- Direct instruction may be required on social skills. These should be encouraged, even if with younger children.
- It is important to encourage music and some type of physical activity (karate, golf, tennis, etc.).
- Singing will help encourage speech and language skills and joining a music group or choir will help with social skills and raise self esteem.
ResourcesKumon, the Japanese home based maths and English programme, is reported to be very successful, there is a National Helpline which you can call to find out more information and the nearest centre to you: 020 8447 9010. It costs around £50 per month per subject. www.kumon.co.uk
The programme focuses on mental maths; 'number crunching'. This means that in school the children can spend more time understanding the concepts rather than counting on their fingers! The children need to spend 10 minutes or so on a worksheet every day with a twice weekly visit to the centre. The programme moves at the pace of the child, so they do not experience papers that baffle them. This in turn encourages a feeling of success and confidence. The routine of doing a paper each day also encourages increased concentration skills and reduces the fear associated with a test paper. It's extremely hard work for us parents but with time and perseverance there are good results. You need to give the programme about 6 months before you begin to see the benefits. The programme works for children who are able as well as those that struggle with maths. If they are an able student then they will soon be working well ahead of school level.
Kumon English provides children with various exercises beginning with correct letter formation and reading skills. Extracting information from texts is built up with techniques on inferencing and other verbal reasoning skills. Grammar, punctuation and comprehension papers follow on. As with the maths programme, all errors are recorded and corrected immediately and the child doesn't move on to the next level until they are totally competent.
Many people have found 'Educating Children With Velo Cardio Facial Syndrome' by Donna Landsman Cutler to be valuable. You can purchase it on Amazon ISBN10:1-59756-109-6. ISBN13:978-1-59756-109-9
Or email the author on: firstname.lastname@example.org Web casts and teacher training CDs are also available.
Email email@example.com for information on home education and home support for school taught children.