19p13.2 microdeletions - Unique The Rare Chromosome Disorder ...

(Grade 11 - equivalent to Year 10,
GCSE year, aged 16 in the UK) doing
Grade 2 studies (equivalent to Year 3
in the UK, aged 7 years) in a special
program:
She is in a mainstream school in
the regular first grade classroom.
She goes to the special education
room less than 20% of the time,
mostly at snack-time. She has a full
-time aid to help her because she
has trouble learning without one-toone
support – 6 years
At aged 10 he went to a new
private school. They were very firm
with him when he misbehaved.
Before that he couldn't read, write
etc because he refused and raged.
Within two months of starting at the
new school he was sitting at a desk,
participating, learning kindergarten
and 1st grade material and loving
school. At 14, he was up to 2nd
grade work and loving school,
reading, writing and doing 3 digit additions and subtractions. The school works
individually with him at his level and speed – 16 years
One adult, with an uncommon deletion of 19p13.2, has a mild learning disability and,
when give only oral examinations, completed a secondary school education with good
grades (Wangensteen 2013).
Sleep
Difficulties sleeping are an issue with at least half of children with a 19p13.2
microdeletion.
Sleep problems are common in children with this microdeletion, although parents do
describe improvements with careful management and over time (Unique, Decipher).
Sleeping problems ranged from difficulties falling asleep and staying asleep to getting up
very early in the morning.
Regulating sleep patterns was difficult with one child at 3½ years old. Even with
medication she was still waking up several times a night. Three years later, the
medication is working well and she is more manageable at night:
With her doctor’s help, we built a special bed with doors that lock, so she is safe at
night and can’t get out of the house. This turned out be very soothing and she LOVES
her special bed. If we travel and are away from the bed, she can’t sleep without it.
The insomnia has been one of the most difficult parts of this disorder (from our
experience). It can be overwhelming, but there is help. Sleep specialists can help find
a medication regime and a routine that can help your child sleep - it will give you
peace of mind and help them relax and feel safe as well – 6 years
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