Why is it that we live in a world where people feel that
they are owed? Lately I’ve been reading
posts on a Facebook group that I belong to about how people get special passes
at Disney World or Disney Land for their kids who have T1D. I find this very strange. I try my best to make sure my son is treated
as normal as possible. After all, he is
still 13 and last time I looked perfectly normal it’s his pancreas that is
broke. His only problem is that he has
diabetes. He does anything and
everything that normal 13 year old boys do.
He loves to play video games. He
is good at sports, enjoys being around his friends.
There are lots of groups that I belong to say be a kid
first and diabetes second. So why do parents
feel that their children are entitled to get in front of a line while at an
amusement park? To me that is sending
the wrong message. I am all for making
sure my child has his rights as a person with a chronic illness/disability but
to be able to go to the front of the line while at an amusement park? Really? Why not be prepared with water for highs and snack for lows? Where I come from going to an amusement park is a privilege, a very cool vacation for families.
Children with T1D are able to have a 504 plan filled out and
on file with their schools to make sure they have certain rights while in
school. “A "504 plan" refers to Section
504 of the Rehabilitation Act and the Americans
with Disabilities Act, which specifies that no one with a disability can be
excluded from participating in federally funded programs or activities,
including elementary, secondary or post secondary schooling. "Disability"
in this context refers to a "physical or mental impairment which
substantially limits one or more major life activities." This can include
physical impairments; illnesses or injuries; communicable diseases; chronic
conditions like asthma, allergies and diabetes; and learning problems. A 504 plan
spells out the modifications and accommodations that will be needed for these
students to have an opportunity perform at the same level as their peers, and
might include such things as wheelchair ramps, blood sugar monitoring, an extra
set of textbooks, a peanut-free lunch environment, home instruction, or a
tape recorder or keyboard
for taking notes.” There
are certainly some privileges that they need in order to stay healthy. For example, they need to have open access to
the restrooms, be able to have water at all times, and be able to have a snack
when needed. To me these are reasonable accommodations. Some other accommodations that are reasonable
when dealing with school aged children are allowing extra time to do
homework. This is one provision that I
have struggled with asking for. My son
doesn’t like doing homework as it is, I’m not about to give him extra time to
do work that he doesn’t want to do in the first place. So we do the best we can. There are times that his blood sugar is too
high and he just can’t think so homework is done for the night. If, and when that happens, he gets up early
in the morning and gets his work completed before school.
On very rare occasions, I email his teachers and let them know that homework
just didn't happen the night before. I am very lucky to be in a school district where he does get some lenience. But
I am not about to give him a free ride.
He still needs to complete the work.
He has really learned with his diabetes that he needs to study. His brain does not work the same. I feel that by giving out children too many
allowances, they will not learn to live in the real world when they grow up and
are adults.
I’m trying to teach my son
to be responsible and sometimes diabetes gets in the way. There is a time and place to use “I have
diabetes” trying to get in front of a line at an amusement park, to me, is not
one of those times. We, parents of
children with T1D, should be teaching our children how to manage their
diseases, not how to get a free ride. We should also not be teaching them that the world owes us because we have a chronic illness. It isn't the world's fault that their pancreas quit on them. So teach them how to deal with it and move on.
I agree with you somewhat. I have a T1D daughter that was diagnosed at age 16 as a Junior in High School. We now think that her pancreas was failing over a long period time and so the symptoms were not clear that she was having problems until she was diagnosed T1D, which took 3 trips to her pediatrician because I knew something was not right. I am not about special treatment, but at the time of her diagnosis she was signed up to take the ACT - so we did ask quickly for accommodations during the testing because she was just getting used to insulin, etc. I tried to put in place a 504 plan that would allow her to go to the bathroom as she needed and the school was very helpful at first and we managed. She made it through High School and was able to salvage her GPA that prior to her diagnosis had suffered because she was falling asleep in class among other problems. Well we wanted her to take charge of her disease and health and did not want to limit her - so when she decided that she wanted to go to college 3 hours away - I about freaked out. I did register her with the college's Disability Resources Office - there are not 504 plans in college - because I was not sure how her new freedom was going to work out for her. However - I am am glad that I did. She does not get special treatment other than she is allowed to register for classes ahead of others which allows her to try and arrange her classes so that she does not oversleep and miss them. I also wanted a way for her to let her professors know that if she was having problems with required attendance due to a Diabetes issues as well and that it was documented before there might be an issue. She has done fine - she is by no means as all - A student, but she is passing and able to manage on her own. She has almost completed her Freshman year with only one trip to the Emergency Room. Others may call that special treatment, but I look at it as a way to help manage her situation.
ReplyDeleteI agree with you. I don't see that as special treatment eiither. I don't have a problem with 504 plans. They give children a voice when they cannot speak for themselves. I also do not see a problem with kids getting to register for college classes (or even arrange schedules) to help them be sucessful. I have put in a request in my son's school for next year to make it easier on him. To me those are reasonable accomodations. There is a time and place to ask for assistance. I have no problem with asking for some certain things to help them succeed. That is giving them a fair chance. Thank you for your comment.
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