Embracing Life & the Child with the Disease

This is a blog post that I started back in the late spring. I thought it worthy of posting even though it’s old:

Ryan was dx’d exactly a week before Christmas his kindergarten year. And the adjustment to the new normal was a “village” affair — Lederer5, extended family, neighbors, church family, and more! But really, truthfully, a rock that I do not know how I could have survived those first month without was the school.

Ryan was half way through kindergarten and there was thought and discussion about pulling him and starting him again the following fall in kindergarten, he was a young kinder with his birthday in July anyway. But something pushed me into sending him back after Christmas break for schedule and routine — very, very important for a diabetic when regulating numbers at the beginning. But, boy howdy, was it ever hard to think about putting him in someone else’s care and driving away for seven hours a day. I have a hard enough time with that even still with my non-diabetic children.

I’m a helicopter mom … AND PROUD OF IT! But the only reason I was able to trust him in another’s care was because of a steady core of caregivers at school. His teacher was amazing and so attentive to him and eager to learn. But the front office: The nurse, the secretaries, the principal and vice principal were not just good for Ryan, they were good for me. They walked beside me. They let me cry and be afraid when Ryan went on to class. They ALL learned how to help Ryan. They played games with him teaching him how to FEEL his blood sugar. A true, total godsend!

And because whatever I needed, whatever Ryan needed, was never a battle and was always accommodated, I NEVER put a 504 in place for Ryan. What is a 504 Plan?  Simply put, a 504 plan is a legal document falling under the provisions of the Rehabilitation Act of 1973. It is designed to plan a program of instructional services to assist students with special needs who are in a regular education setting. I have never felt the need before … until now.

And why, you ask, do I feel it necessary now? Two words = STANDARDIZED TESTING. Ryan is in 3rd grade. And in Texas, STAAR testing begins. It replaced the TAKS, that replaced the TAAS, that replaced the TEAMS and so on and so forth. I am NOT a fan of standardized testing. And in truth, I don’t know of anyone who is. But in public education, there is no way around it. Ryan is brilliantly smart. BRILLIANTLY SMART. I am not exaggerating. He just finished a 357 page book he started reading two days ago. He is gifted with numbers and would be even if his life wasn’t all about numbers with diabetes. He loves to learn. But we have learned that with practice testing for the STAAR test that is in April, that he is very, VERY anxious for this test. His sugar spiked to over 300 and stayed there for almost three days anxious about the PRACTICE testing for STAAR in January.

Unfortunately, he cannot control his blood sugar. And with these highs for Ryan, when we believe they are at least partially induced by stress/anxiety, his body seems to become resistant to insulin, the body simply does not do what it is supposed to do with that synthetic life-saver until his nerves calm down. We are working on dealing with stress/anxiety, practically and with tests, with Ryan. And we have always wanted to give Ryan the most normal life and allow him to do as closely as possible what all other students are doing. And let me tell you, that’s hard work. And I have feared a 504 because I don’t want him to EVER use it as an excuse, as a crutch. And I think, he won’t have 504s in the workplace as an adult. So let’s teach him to roll with the punches, prepare him for his unique life. But you know what? He’s 8. He’s not an adult. Not even close. And I can’t expect him to act like one. And, so much is put on these standardized tests. That’s a whole other blog on a totally different blog site and I won’t jump on my soap box now.  (BLAH – I already feel my blood pressure rising.)

So, is it unfair to not only try to get him to cope with nerves and do these extensive tests and practice tests and checkpoints and unit tests AND expect him to work through it with a dropping, spiking or swinging blood sugar that does very much effect him cognitively with concentration and focus? I have recently decided the answer there is most definitely, “YES!”

So, with the counselor at school, the nurse and Ryan’s teacher, I tearfully sat down and we designed a plan for Ryan, for the “just in case” scenario.

And during the STAAR testing in April, we utilized that plan. His blood sugar was way too high during testing. He had to stop, bolus a correction (give insulin to bring his sugar down) and he walked with one of the coaches for awhile to get him up and moving while the insulin did it’s job. And it went smoothly. No one can look back and question anything that was done. The school and the teacher(s) are protected by that document and so is the integrity of Ryan’s HIGH score on that test.

And bonus: it’s already in place for this year and for the years to follow when he leaves the campus for a new one next year.

And I’m thankful.


Comments on: "To 504 or not to 504 … that is the question" (2)

  1. I am glad you decided to 504. I worked in the disability services center at a college for a while. I think many people don’t realize that accommodations are not retroactive. They talk about how they hope they will never be in a situation where they will need them, when that is actually the problem. By the time you realize you need accommodations it’s too late. Have a plan in place to protect you and THEN hope you never need it. Sorry… you touched my soapbox!

  2. Mom (Nana) said:

    Enjoyed the read and am so thankful for Ryan and his care givers and support team for you!
    Praying daily for a cure🙏
    Love, Nana

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