A question I’ve seen asked numerous times throughout the 17 or so years of being a member of The Registry. Now that we’ve got this great blog, I thought it a great opportunity to create a post sharing how members have told self-advocates about their C18 difference.
“When Lillian was about 6 or 7 years old, I
explained to her one night that she was different from her peers. Not in a bad way, just different, and I pointed out some of the ways in which she is different. I explained that she could choose to see this in a positive light, and to use it to her advantage in her life. (As she matured, I did also teach her that it is okay to be angry and sad about it, too, that all feelings are
valid.) (Team TLC pictured on the left: Lillian, Camilla, Thomas)
She didn’t fully understand what I meant at
the time. However, as she aged, I let her observe me freely discussing her
18p-, and I also encouraged the endeavors she really enjoyed (even though the
outcome was a bit different from typical folks). For example, her writing of
stories and poems, and her artwork. I encouraged her to continue, with the
underlying message that with her finished products being atypical, that is what
makes them stand out.
From the time Lillian was in 1st grade through
the time she left the public school system in the 6th grade, I gave a class
presentation regarding chromosomes and speech differences. This was prompted by
Lillian’s 1st grade classmates asking me lots of questions about her.
Throughout the years, Lillian helped with a few of the presentations.
Otherwise, she sat with her classmates for the talk, answering any questions
they had. (Lillian was homeschooled from 7th grade through 12th grade)” –
Camilla Downs, Mom to Lillian Darnell, 20 years old with 18p-
“James has been aware since he was little that
he was ‘different’ medically as we have always been open about ch18 and his
visual and hearing impairments but when we attended our first conference in
Manchester (UK), when he was 4 years old, he became more aware and seemed to
start having some understanding of it. We also started talking more about CH18
and his special family.
Every year since he has wanted to know more
and more about his deletion. He is now 12 years old and is planning an assembly
in school about his differences to help others understand more.” – Helen
Kirkham
“We were applying to a summer
get-ready-for-college program at some point in high school, and the form asked
about the applicant’s disability. So that was a good time to address it. She
was maybe about 17 — she was diagnosed at 9, but a counselor advised waiting
till she was older. The counselor said — something along the lines of, ‘teens
struggle enough with self-image and identity, why layer on one more thing to
needlessly worry about’. She seemed glad to have an explanation/reason for her
issues.” – S.
“We have always spoken openly about Holly’s
deletion and other diagnoses. We have also always been around others with
special needs. I don’t remember how old she was but one day when I was driving,
Holly randomly asked me what it meant when one of our friends was in a special
needs class at school. Since we homeschool that was a new idea for her. I
explained the friend’s difficulties and health issues. I then told her that she
has a chromosome deletion, apraxia, chiari malformation, etc. I told her that
if she was in public school she would be in those classes, too.
When we got home, I found the diagram genetics
had given us of typical chromosome pairs and then her diagram. I explained how
she is missing some information, but we don’t know exactly what. I told her
that is the reason she had to take hgh shots (growth hormone), thyroid
medicine, etc. I explained that everyone has different strengths and weaknesses
but that doesn’t make anyone better or less than anyone. Holly seems to
understand better than I would have expected. I feel it’s helped since we have
always been around different abled people and never kept anything hush hush.” –
Renee
“We only found out last year when my son was
17, and to us it was a light bulb moment. It suddenly made all his disabilities
make sense as to WHY? We shared this with him and he felt better that there is
a reason he is the way he is.” – June F Jamieson (Alex pictured on the left)
“This is kinda difficult. We have told Evan
about both his Ring 18 and his autism. We talk about them all the time. I just
don’t know how much he understands.” – Tracy Stevens
“I have not sat my 13 year old down and said
“you have 18q-“ and described what the symptoms are. However, since birth we
have always said things like “everybody is different”. We talk about why he
needs additional supports at school, why he needs hearing aids, etc. (not that
he will wear them!)” – C18 Member
“We have always talked openly about
differences in our house and how every person excels at different things. We
always answered questions as age appropriately as possible for our daughter and
her younger brother. Our conversations really got specific to CH18 right before
we took our daughter (and her sib) to her first conference because we knew she’d hear a lot when we were there.
We paired up with our bestie, Michelle Emerson,
who we were travelling with, and started a big conversation about chromosome 18
rock stars and all the cool things they could do. This kept the language the
same with the kids, who hung out frequently, and got them prepped to be their
awesome selves at the conference.” – Lori Percy (Ava pictured on the left)
“We’re very fortunate to have friends with the
same diagnosis, although different challenges. We talked a lot about how to
raise it with the kids. We agreed on common language but spoke to the kids
separately before going to Chicago.
The first couple of times I took E to the
conference, he was too young to understand so it was just a fun vacation for
him. But once he got older, I was sure to have an actual conversation before we
went to the conference.
And of course, that language and understanding
comes in handy. Several of the C18 families are quite close so E always knows
it’s a safe space.” – Michelle Emerson
“We have used the term 18p deletion around our
son since he was diagnosed at 16 months. We had our first age appropriate,
direct conversation about it when he was 3. He is 8 now and really starting to
come into his own as far as advocating for his needs. He can also accurately
answer questions at medical appointments when they ask about health conditions.
He has a number of friends with a variety of diagnoses, and most of their
families have been really open about it too, so having a diagnosis is pretty
normalized in our community of friends.” – Jacintha G
“My now 42-year-old daughter has always known
she was “different” than her younger sister and that she was in different
classes etc. But we didn’t know the 18p- part until she was an adult. She knows
that she has a “label” now but doesn’t care much. She is just as she has always
been; a happy person who knows she is a bit different but doesn’t really care.”
– Elaine Kingsbury McMunn
(Stacey Gallardo’s family pictured above)
“Amelia knows all about chromosome 18 but she
doesn’t understand it. She doesn’t realize she is different. Makes it so much
easier that way in my opinion.” – Stacey Gallardo
“We’ve always been open with Becky. Explaining
appropriately at each age level. She’s known never to use the word “never”,
instead that some things take a little longer. Her college professor spoke of
genetics, specifically 18ring. After class she explained how she has met
individuals with Ring 18 and proudly informed him of her P-! Teacher was so
impressed that she seeked me out at graduation.” – Shelley Ingram-Hunt
“We also never didn’t talk about it! I wanted
him to hear it from us, not someone else. Not sure he even understands. He
knows he is special but not sure he knows what that means! We raised them both
to know that difference was okay, and in our family it was normal and good to be
different from everyone else.
My daughter (not CH18) pushed every different
button out there. Eric accepted easily that some people with CH18 can drive (we
know some can, but he will never drive) and he said “oh man that
sucks” and that was it!
Not sure he understands some stuff, but I feel
like he is entitled to the explanation! Sometimes the explanation brings
questions and sometimes it does not! He is very happy with who he is!” –
Cynthia Boom Josefson
“We have always talked about her 18p- and apraxia.
That her body was made differently, and some things are harder for her to do
but I am proud of how hard she works. I figure “normalizing” her differences
will make it easier for her to accept them without being embarrassed. I am not
sure how much she processes her differences. She is a pretty confident social
kid.” – Rachel Koester Sabo
(Kathleen’s family is pictured above)
“We have always talked openly about Hannah’s
syndrome. She realizes she’s different, but does not understand why. I think
she started noticing others with ID when she was 6 or 7. She definitely
identifies with others with intellectual disabilities. Particularly, those with
T18p. She is drawn to other tetras at every conference, without any influence.
That’s now our biggest reason for attending conferences. She gets so much out
of her c18 friendships.” – Kathleen Bernadine
“Oh, gosh, we’ve never *not talked about it,
ever since we found out when Toots was not quite a year old. Her brother was
rising five then and had LOTS of questions, so we found pictures of cells and chromosomes
and explained the concept of a deletion to him using strings of pop-beads in
stacking bricks. He talked for several years about people’s ‘strings’ being
different…
And then the girl herself grew up knowing that
other people didn’t have dozens of medical and therapy appointments and as soon
as she was old enough to ask questions, we answered hers in the same way we had
done for J.
Obviously his understanding of genetics and
the mechanisms of cell division and reproduction is now up to A-level biology
standards, while M’s may never advance beyond cells as sort of miniature hollow
play-bricks with strings of pop-beads inside, but that’s fine. She understands
as much as she needs to, and probably more than the average lay person who’s
never had to think about genetics. And any time she wants to know more, or to
recap, she knows she can ask.” – Katharine Newman
“We have always talked about it. We all have
chromosome 18, but our gal knows hers is extra special with q-.” – Laurie
Johnson
This was such a popular post in the Facebook
groups. There were folks sharing (and asking) about how siblings were told that
their sibling has a C18 difference. There are also self-advocates who would
love to share how they were told, from their perspective. Keep your eyes on the
Facebook groups, as I’ll ask in the group for feedback from members.
For those attending, I can’t wait to see you
at the conference!! – Camilla Downs