Angelman Today January / February edition 2014 | Page 25

Lukas also participates in Special
Olympics bowling and bocce ball.
Lukas especially enjoys the
bowling and has his own Chicago
Bears bowling ball!
For Lukas these sports programs
are keeping him connected in the
community and making friends. As
parents it’s about those same
things however; we are trying to
ensure that he is staying activity
and on his feet.
When Lukas is not playing a sport
you can often find him at a local
high school game such as
basketball or football. Lukas enjoys
watching as much as he
participates. He currently has
created a great relationship with
the High School girls’ basketball
team. They are all so thrilled to
have Lukas at the game and they
make the effort to come say hi to
him at each game. Attending these
different games for Lukas is
another way for him to be
connected with classmates,
teachers, and community
members.
Lukas is also attends the local
STARS club which is an
opportunity for teens in with
disabilities to “hang” out in the
community with their peers. Lukas
loves and looks forward to each of
these events. Needless to say we
are very busy taking Lukas to and
from different activities but I really
wouldn’t have it any other way!
Lukas has made us very proud to
see how much he has
accomplished over the years in his
ability to walk (we are almost at a
good run). He is able to interact in
so many different ways than when
he was in a wheelchair. There is
always the concern with the
doctors and us that one day Lukas
will get too tall and will again need
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the wheelchair so at this time we are
grabbing at every opportunity to keep
him active.
As a non-verbal kid this brings about so
many challenges, questions, and
behaviors. Lukas has his own language
that we as parents can understand
most of the time. Communicating to the
outside world is much more difficult. In
hopes to close that gap we have Lukas
use an IPad for communication. He is
currently using the MyTalk app and is
pretty successful for the most part.
Anytime you have a device speak for
you your language is limited.
What is great about the MyTalk app is
that we customize this for Lukas with
his pictures, favorite things, what he
does in school, and etc. The IPad for
him is much more portable now that he
is not in a wheelchair. Lukas is
motivated by electronics so this was a
good choice for us. I tend to find the
biggest challenge for Lukas is when
others don’t know how to use the app or
know that the app is there. This creates
frustrations and behaviors for Lukas.
Lukas can also communicate using
some sign language and by answering
yes or no questions. In 2010 Lukas
finally spoke his first work which was
Mama. Trust me when I say this
completely melted my heart and I still
love to hear it even if it’s a thousand
times a day. Lukas continues to go to
speech therapy. Often times I’m at a
loss with communicating with Lukas. It’s
just breaks my heart when he is sick
and just can’t communicate to me what
is wrong. Or holidays and birthdays
when he can’t communicate a present
that he would like. I do worry about the
future and Lukas’ communication needs
when we are not around. Having a child
with Angelman Syndrome or a disability
is not something I imaged in my life.
There are so many struggles that come
with journey we are on. The struggles
are truly only known by those who have

or are walking in our shoes. The
older Lukas gets the harder the
struggles seem to be. It’s
amazing to me how much before
Lukas we took for granted. Now
we treasure every moment big or
small and are so thankful for what
he can do! We are so very
blessed to have this sweet boy
(teenager) in our lives to show us
the little blessings that we would
have probably just taken for
granted.
January / February 2014