October is Down Syndrome Awareness Month, a chance to spread awareness. During the month of October, we celebrate people with Down syndrome and make people aware of our abilities and accomplishments. It's not about celebrating disabilities, it's about celebrating abilities.
To help celebrate the boys and promote awareness with their classmates, here is the treat the boys are sending home this week (sorry it's turned the wrong way):
We also included this letter for parents:
Dear Parents,
As we settle into this school year, we
would like to take the opportunity to give you a special introduction to our
sons, Ben and Jonah, who are in Mrs. Egan's 1st grade class.
The boys are very independent, active little
boys. They enjoy a wide variety of activities … playing with toys (blocks,
Rescue Heroes, cars, trucks etc), playing outside, swimming, using the IPAD,
and watching their favorite TV shows. They also just finished up playing baseball in
the Miracle League up in Manitowoc
which is a baseball league for kids with special needs.
Besides being very “typical” 1st graders, the
boys also happen to have Down syndrome. Your child might come home wanting to
know more about them and why they are a
little different. Based on our past experiences, most questions from children
this age are related to the boys' speech and their inability to communicate effectively.
"Children with DS have anatomical and physiological
differences in the mouth and throat region that affect feeding, swallowing, and
oral motor skills. They also often have hypotonia, or poor muscle tone in the mouth area." Because of these things, speech is often
delayed for children with Down syndrome and sometimes difficult to
understand.
One thing to remember though, even though Ben and Jonah may
have delays in speech, they understand what is being said to them. So please encourage your child to talk to the
boys- they love being part of the conversation!
Ben and Jonah work very hard in speech therapy
several hours per week to conquer their speech delays. Both have a long way to
go, but they have come so far and we are so proud of them! Sometimes to
help the boys communicate, they will use sign language.
Something
extra unique about Ben is we adopted him from the country of Lithuania last
year. So he has only been exposed to
English for one year which makes his speech successes this past year even more
impressive we think!
So
if your child is curious, they boys are not biological twins even though they
are both in 1st grade. Ben is actually 3
months older than Jonah.
Both boys are primarily visual learners and
will imitate what they sees others doing. We encourage you to share what
you feel is appropriate about the boys with your children so that they can
understand how they are different, but more importantly how they are the same
as they are. Encourage them to support them without babying them, and to
talk to them like they would anyone else, perhaps giving them a bit more time
to respond and a little more explanation if they don't understand right away. They can
also remind them to stay with them if they see her heading away from the group.
Research has shown that children with Down
syndrome benefit from placement in a regular education class, receiving their
education alongside typically developing peers of their own age. Regular
opportunities to learn and play alongside typically developing peers gives
children with Down syndrome the role models they need to acquire new skills,
encourage age-appropriate behavior, and develop independence and
friendships.
Inclusive education benefits not only our children,
but studies have shown that inclusion has a great benefit to the other children
in the class. Inclusion facilitates greater understanding, tolerance, as well
as learning to be supportive of one another. Children also learn to value
diversity and to appreciate that everyone has something beneficial to bring to
the life of the school and the community.
We are grateful for your support and for the
support that Ben and Jonah will have in Mrs. Egan's class. Ben and Jonah will have a team of
people that will help support their learning needs and facilitate the inclusion
support. We are also grateful for the opportunity to be in a learning community
together and look forward to meeting you (if we haven’t already) and working
together for a great school year.
If you have any questions about Ben and Jonah
or Down syndrome, please feel free to contact us at mlavey@wi.rr.com or 920-668-8302.
We are very open about our experience and in talking about what it means to
have Down syndrome … no question is a silly question and we would rather share
with you, than have you wonder. :)
Sincerely,
Andrew and Mary Lavey
We have put together a Q&A to help you
field some questions that your child might have, or to help you in talking with
your child about Ben and Jonah. We hope this is helpful to you. :)
What is Down syndrome?
Children born with Down syndrome have one
extra chromosome in some or all of their cells. The chromosomes contain
directions that tell your body how to grow. When a child has an extra
chromosome it mixes up her body’s directions a little. That is why they may
look a little different and have to try harder to learn.
Will Ben and Jonah always have Down syndrome?
Yes, it is something they will never
outgrow.
Will Ben and Jonah be able to do things like
me?
Yes, they will be able to do everything like
you do, it may just take them a little longer to learn than most kids. They will
learn to talk more clearly too, it’s just that learning to talk is often very
hard, but just like anything, with a lot of hard work and practice they will
get better over time. They boys also can do things you might not be able to do
yet, like use sign language.
Are Ben and Jonah sad that she has Down
syndrome?
No, right now Ben and Jonah are happy to be growing
healthy little boys. They love to learn new things, just like you and me.
You’re fortunate to be growing up in a world where people understand that
everyone is unique, but that we all enjoy and want the same things, like having
loving families and friends, going to school, and being accepted for who we
are.
