Hello! I am new to this site and would love to share our families story with you...and hopefully gather some opinions and knowledge to help us with the struggles of Type 1 Diabetes.
We were your typical family before April 2008. My husband and I are both educated, involved parents to 2 amazing daughters. I was a teacher and my husband is a RN. Our kids had never really been sick except for the usual strep throat, allergies, and ear infections. We lived the fast paced lifestyle of school, work, and endless soccer schedules. On April 21, 2008, my husband and I realized our daughter's recent spacey-ness and weight loss were signaling something was very wrong. I remember my husband saying Type 1 Diabetes but shrugged it off until the Dr in the ER confirmed the diagnoses...and my world was rocked! As a family, we decided I would take a year off from teaching to help everyone settle into our new "normal." We were not going to just survive but we were going to THRIVE...to be honest, that next year was all about survival. We experienced the highs and lows...the struggles in public school and 504 plans...the stares and questions of friends and strangers....but through it all we grew and became stronger. We ended up selling our home so we could move to a school system known for handling Type 1 and other disablities extremely well. Our daughter truly is amazing and independent (thank you God for her determination!) and her strength inspires us! The following year, my husband and I opened a custom design and screen printing business named Type 1 Teez and we are dedicated to donating to JDRF through our work with other Type 1 families we print team shirts for every year. We are thriving now..even though some days still feel like surviving but I guess that is how this disease is. Some days are great while others are a struggle...which leads me to what I need help with.
Our daughter (AC) with Type 1 is 13 years old now and a competitive soccer player on a traveling team. We have played soccer at this club since she was 8 (before T1). After her diagnoses, we decided we would handle all diabetes issues at the soccer fields between my husband and myself. We have never left her at the fields or been asked to submit a Health Care Plan or Dr orders. She has been playing on the traveling teams since summer of 2010 with no issues. For the Spring season, the club switched the coach of the team. We had not experienced any problems until our 1st scrimmage game in February. My husband and daughter had decided before the game to try a new half time plan which included her checking on her own (usually I go across the field, check her, and handle everything). She was to check her sugar, text him if was normal, eat a snack, and focus on her coach's instructions. If she was low, she was to call him and let him know. AC checked her blood sugar before the game and was in the low 200's. During the 1st half of the game, she did not play but still checked her sugar at halftime. She was 52 and told her coach. He responded by asking her what she should do. AC told him she needed to call her dad and drink a juice. The coach refused to allow her to call her dad and instead said to run across the field to find him. AC tried to explain why she shouldn't run across the field but he refused and said to run. AC ran across the field drinking her juice, told my husband, and walked back across the field. When she got back to the bench, she was unable to focus and sustain eye contact with the coach. With the team present, he asked "Can you not focus on me or make eye contact when you are low?" AC tried to explain that she couldn't and apologized for her inability. He then said, "If you can't focus you are going to have a really hard time fitting in with this team" and "If you can't focus on me, I am going to keep you on the bench the whole game." He then told her how he had 7 yrs of medical experience and knew what she could and could not do when she was low....basically needed to stop using diabetes as an excuse. AC rechecked her sugar and was now 46...at this point she knows she can't call us and shouldn't run again so she decides to treat her low again. The players and coach take the field again and she waits to recheck again. At the recheck she is now 90. After she tells the coach her BG is 90 and she is okay, he tells her to run the field (the usual warm up for going into the game) and she tells him she hasn't eaten her snack yet. Coach tells her to run anyway...so she does. Finally AC decides that she MUST stop and eat her snack, so she gets her banana out of her rescue pack and enters her carbs into her pump. The coach sees she is no longer running and tells her to run. AC then runs the sideline of the soccer field while eating her banana....in front of 2 teams and parents. She continues to run until the coach blows the whistle for the end of the scrimmage game. He talks to the girls about "Negative Emotions" at the game and then dismisses them. Another girl walks with AC and tells her she is sorry for how the coach talked to her tonight and she understand AC's disability....we live in a community that has a staggering amount of Type 1 kids in our schools because our school system handles their needs so well. As a family, we took a few days to process and reflect on what our values and expectations of AC's soccer experience. We decided to withdraw her from the team and notified our team manager before our game that weekend that we felt his actions and comments were incalled for but never mentioned Type 1 D. At the game, the girls asked the coach where AC was. At 1st he told them he had "fired" her and then told them she had quit the team. He then told the team he had nothing against people with Type 1 Diabetes and continued to discuss her medical condition without her present. On Monday, a team mate came to her at school to let her know she agreed with Coach that AC used Type 1 D as an excuse.
I notified the President of the soccer club and requested a meeting with him. He would not meet with me until he had secured a meditator to sit in on the meeting. At the meeting I gave him all the above details and explained that I expected this matter to be handled. I had 3 requests of the soccer club: 1. The coach be banned from the fields and no longer be allowed to coach any teams with the club, 2. the Vice President of the club resign due to the fact he did not make any attempt to notify the President that parents had a complaint with a coach's actions and comments (he was made aware of the situation on the day I sent the email), 3. the club issue my daughter a letter of apology that would also be read to the players and parents of the team. While waiting on the next step to begin, I went before the Park and Rec Board at an open meeting to notify them of the events that took place on city property. A displinary board of soccer club parents were gathered and after SEVERAL weeks we met. I again explained the events and they asked questions but focused primarily on why I didn't just take her home if she was having a hard time with her BG or why didn't I call 911 when she was low...if it is really that serious of a medical condition...one of the members of the board is also in charge of emergency response for our community and agreed that I should have called 911. Keep in mind I didn't even know she was 46 until after the game but anyone who lives with T1 everyday knows...lows and highs are part of it and if you can drink a juice box then you handle it and move on with your day. Needless to say, the board came back with the decision that no discrimination happened, all employees and elected board members acted appropriately in the situation, and they did not owe this child or family any kind of apology.
Now we are trying to figure out what our next steps are. I plan to go before the City Council at the next open meeting but feel like we need legal representation and our diabetes dr with us. We are not a family who would ever look for a lawsuit but I truly feel like there are times when you have to realize you have the opportunity to educate others and shine light on situations which clearly are not just. My daughter will face challenges and discrimination throughout her life. My job as a parent is to help her navigate her journey through Type 1 Diabetes and help her to recognize what discrimination looks like and understand the impact her voice can have towards ending it.
I know I have written a small novel here but would greatly appreciate any advise, opinions, etc anyone may be able to offer us.