Island Parent February/March 2021

puberty and because of his PWS will need some help, so we’ve
had complicated phone, online and hospital visit appointments
all of which have resulted in needing to see his specialist when
she’s in town so she can actually see him herself. All our medical
professionals have been amazing, my son is utterly awesome,
but it sure is imperfect and he has no life-threatening
issues.
3. Loss of Community and engagement
Colwyn is mostly with his dad and me when he’s not in
school. There is funding for camps and support for families
with special needs, but Colwyn is a kid who requires one-toone
support, so he has both been turned away from group
activities and we have elected to not send him to camps for the
past 11 months.
Many kids his age can go to soccer practice or other sports
and be safe. Colwyn and his peers can’t. Trinity was scheduled
to attend Easter Seals Camp last summer, but it was cancelled.
“They delivered a box of resources…crafts and recipes and
Trinity was looking for the recipes just recently saying, ‘I want
to do SOMETHING.’” Geisler and her husband have elected to
keep both kids home and homeschool because of Trinity has a
history of respiratory illness. Specialists for speech, occupational
therapy and physical therapy have moved online, too. Kids
who need assessments are delayed even more than usual.
4. Homeschooling is HARD
Trinity’s family is having a really hard time navigating homeschooling
and she is one of those kids with special needs who
falls through the cracks.
“She’s always in the margins, her diagnosis is rare enough
that most doctors don’t know what it is.” says her mom. Trinity
displays autism traits, but not enough to meet the criteria.
“So, we don’t get extra funding or support other than what
is offered through her Individualized Education Plan (IEP) at
school. Now she’s not in school, we’re on our own.”
If Geisler’s son attended school, the risk of him bringing
something home led to her keeping both kids home.
“Elli is more vocal about how unhappy he is,” she says.
“Trinity is more silent, but she spends a lot of time home alone,
can’t go anywhere, and there isn’t a lot available, so she’s doing
a lot of crafts.”
Though most families with neurodiverse kids have probably
already shaped their lives around their kids’ needs, the loss of
school and outside support adds an immense strain.
5. Inclusion is out the window.
Teens are programmed for socializing, so it makes that at 14
Trinity is really missing her friends. Colwyn is at school every
day, but in so small a cohort, he no longer mixes with the typical
kids in the school. Inclusion is out the window. Though I’m
relieved that his cohort is only six kids plus EAs and a teacher,
Colwyn remembers being a part of the larger school and misses
those interactions and the classes that he once attended in aca-
12 Island Parent Magazine IslandParent.ca