Past years, my sister Peg and I would be just about to pop a turkey in the oven. We’d be making side dishes-her with all her measuring cups and spoons, me guess-timating with every plop of ingredients. We’d be laughing. I am thankful for all the time we had to make those memories.
Years before that, a distant and foggy picture in my brain-of waking to the sound of kitchen clatter, my Mom preparing for the festivities of the day- in the yellow kitchen of Glenview Pkwy. In my head, I can still see-all of us loading ourselves into the family car, on each other’s laps, the car floor, in the hatch and heading off to church with Dad. I can smell the scent of the wall heater in our dining room—cranked up to warm the room before we ate. I can hear the whisper in my ear from Mom “Don’t take any food until the guests have theirs.” There were always guests. So I am thankful for the picture, still in my head though a bit shady, and the chance to make those memories.
This year, two kids of my own, and heading to my sister’s for the holiday. As I look at them in the back seat, I realize the weight of creating memories for them. I think about my parents and sister, now in Heaven, and know back when they were making memories-they were doing so while mourning a lost loved one too—but they smiled, laughed, burned the stuffing, and carried on- because they felt the weight of making memories for me. I am thankful that they did it so successfully, and I am thankful I get the opportunity to do the same for my own.
I am thankful for my husband and children. For my brothers and sisters-my first and forever friends- and my parents who gave them to me. I am thankful for my parents and sister by marriage. I am thankful for cousins, aunts, uncles, and in laws. I am thankful for friends, for my work, for where I live and my neighbors.
I am thankful.
There is a dance that parents of kids with needs boogie across NYS called Student Support Services. For some it’s a ‘Flashdance’ a quick jig with their school system to get supports and services in place. For others-it’s a ‘Dance Marathon’ a never getting a breather, meeting after meeting, full endurance workout to even get the basics in place.
As a student and family advocate I often wonder about “the process.” Why is it so complicated for some and easy for others? Why is the ‘how to’ on some school websites so different from the actual ‘how it goes down?’ Why does State Education and Federal Education Department’s guidance say one thing and some schools across the state say another? Why don’t they all just follow the rules?
I don’t have any of those answers.
As I sat through a meeting with a parent and school faculty the other day- with contrary statements being throw out when compared to information given in emails, school website, and other meetings with this parent- I was perplexed, again. As I listened to ‘trust us,’ from people who already broke any trust this family may have had by misinforming, not responding, and not doing what they agreed to—I saw Mom’s face: Despair, frustration, and sadness. When the educator told the Mom “Just call another CSE” like it was that easy—no regard for a family fighting for balance: working many jobs, ensuring the health and safety of their child with special needs, ensuring the needs of their other children, the doctor visits, the up all nights, the emergencies… No regard for the fact that the last CSE seemed so productive at the time—just for the parent to walk out of that meeting and have everything determined thrown out the window under the tune of “that’s not what we said.”
I will never forget the look on that Mom’s face.
Today, there will be calls to State Ed, legal teams, and more.
I also won’t forget…today-this brave Mom committed to continue to ‘dance’ for her baby.
I was given a great honor recently from the American Diabetes Association. On September 24th I was presented with the National ACT Volunteer Award. An unbelievable surprise, and as I sat listening to my friend Amy from the ADA speak about me, I was so moved, and yes, there were tears.
The words on it say it all…SHARE, ACT, LEARN, GIVE.
I don’t deserve an award for those words…for aren’t they exactly what every TYPE M (Mom of a child with diabetes) is doing every day? When our children are diagnosed with this crazy, unrelenting disease—what choice do we have but to SHARE, ACT, LEARN, GIVE? We band together, us TYPE M’s, and we will not give up in the face of adversity, and when necessary—we will STAND UP for another when the difficulties of life with D prove overwhelming. Type M’s—I accept this honor on behalf of all of us!
We are in our 5th year of living with diabetes in our house. The unwelcome visitor, like all visitors, welcome or not—we carry on & try everyday to fit this monster of a disease into our lives – instead of our lives being centered around diabetes. Some days we win, some days D wins.
5 years in, and I’m still talking diabetes to all and everyone who will listen. I’m still raising $$ to support the mission of The American Diabetes Association: “To prevent and cure diabetes and improve the lives of all people affected by diabetes.” I believe in working toward a cure, (and I believe we are close) but until that great day—I also believe that people affected by diabetes need help in living with this disease. Programs like Safe at School, Diabetes Camp for kids, adult education sessions, support programs for people with diabetes and their families, the Risk Test effort, and so many more programs are needed and necessary…and the ADA believes that too.
I’m often asked—why are you still doing all this diabetes stuff, isn’t he stable now? Isn’t he on the pump? Those questions DEFINE why I ACT…because ‘stable’ is a pipe dream, ‘the pump’ is not a cure, and these questions demonstrate the public misunderstanding of what diabetes is—beta cells in the pancreas that just don’t work like they should and children and adults facing the 24/7/365 workload that is life with diabetes. It never shuts off, it never takes a vacation, it knocks you down, and tries to take you out…but these children and adults DO NOT GIVE UP!
I won’t give up either.
This year our family will be taking “What’s Your Type” into more schools-including medical schools. We are taking “Safe at School” on the road—across the state—so more parents will be informed about how to gain that TEAM effort with their schools to create a successful, inclusive, safe school journey for their children. We will be riding our bikes in the Tour de Cure for the 4th year, planning support group outings, attending health fairs, community events, and more.
On behalf of all people living with diabetes, we will continue to…SHARE, ACT, LEARN, GIVE.
He’s growing up, getting taller, getting smarter, being brave, and self managing type 1 diabetes.
I’m getting greyer, shorter, being brave, and learning how to raise him.
I remember teaching him to ride a bike. It was easy with training wheels. “Look at you! Look at the big boy!” All the while—the training wheels keeping him upright. Then I took off one training wheel—and he learned to balance, then the next, and he learned to fly—pumping those pedals with all his might—staying upright.
Type 1 diabetes didn’t come with training wheels. Those early days—such fear. The impossible task of sticking your baby with needles and making it seem average, normal, and easy. Fake it till you make it. Hiding the tears of a parent—not wanting to inflict such pain. The first injection I had to call my boss, a doctor, and ask for help. I was too scared to do it. Injecting an orange through the training class—I was a master—doing it to my 6 year old son—I was a disaster. My awesome boss, said come right over—but he did not give the shot. He looked me straight in the face and told me “muster it up—because this first step sets the rest of the journey.” I will never forget it, and will be eternally grateful. I gave the shot.
Fast forward-year 5. My son now gets the job done, everyday, through school work, sports, and all his 12 year old obligations. Looking back, I know how we got here—necessity. He had to learn, this is his life after all, and he needs to know how to live it, but I still want to be a part—a safety net.
Is my need getting in the way?
Today I flipped my lid because he forgot to text me his BG at the scheduled time. I sent a text that said ‘BG!!!!!!!!!” and received a prompt reply ‘158.’ Then ‘SRY Forgot txt.’ I was MAD!
Forgot! What!!??!! Then came my flip out. No video games, no computer, no anything! Along with a lecture- a loud one- on remembering and the importance of keeping me in the loop.
Now I sit, regretful. Why does he have to keep me in the loop? Why-because he is 12? Maybe in real years, but in diabetes years he is 112. I know that. Did I respect that? I don’t think I did.
We will talk it out. I will tell him I am learning, and I realize so is he. Learning without training wheels.
I am a volunteer Safe at School Advocate for the American Diabetes Association in New York State. I usually don’t get a call from parents for advocacy assistance until the situation seems dire-when the fire of problems is fully engulfed, communication between home and school shut down, and home schooling seems like the only option.
So, as school is almost upon us in NYS, I am going to write about issues faced as a volunteer advocate in NYS these past few years, share some tips and facts I learned along the way, and helpful links.
A solid 504 plan is much more than being able to drink a juice box as needed. Diabetes is complex, and not a one size fits all disease. Bringing diabetes to school-each child’s needs will be different. The best FIRST STEP for parents: get educated on what you need to know- to help your child with diabetes be safe and successful in school.
Before you even begin the process:
Start doing some homework. Search your school websites and student handbooks. Know district policies on items your child may need accommodations for—like extracurricular activities. Know the administration of medication policy, policies on field trips, truancy, and home bound students—just to name a few. Know your school ‘rules’ and how diabetes might have to break them before you even start. This is where you begin to build your plan–An example: it is against district policy for a child to eat or drink on the school bus. A child with diabetes may have a low on the bus and have to—so it needs to be documented in the 504 plan that student can break that ‘rule.’
Search your district website for info on 504/IEP process and who to contact. You need to know your schools chain of command and request process.
Find out whom to file your request with and do it in writing.
Know laws and regulations:
Know the process: right up to the school board—and past your district—
State Education Department:
and the Office of Civil Rights:
Read the parent guide from the NYS Education Department:
Gain knowledge by reviewing the Safe at School program from the American Diabetes Association:
and The Children with Diabetes Handbook from the NYS Health Department:
(Sample plans are included in these guides)
Know the difference between a 504 plan and an IEP plan.
A 504 plan is not a special education plan. You need to know A 504—it is not about academics or discipline –it is a list modifications and accommodations your child may need to manage their health condition. If they tell you your child doesn’t qualify for a 504 because your child is getting good grades or doesn’t have a behavior issue—that is wrong information. A 504 will include testing and homework modification because diabetes affects those things—but it does not list educational goals like an IEP-Individual Education Plan.
If your child is not getting good grades, maybe has some behavior issues, needs academic intervention, or has a condition that affects learning– in addition to diabetes—you would be asking for an IEP—Individual Education Plan and diabetes accommodations would be included in the IEP in NYS—not 2 separate plans. An IEP is part of special education.
You need to know which one your child needs before going into it—because if you get on the 504 train and your child needs educational or one on one assistance—you won’t find it in the 504 process.
504 plans or IEP’s, by law or regulation do not have to be signed in NYS. Some schools sign it—some schools don’t. So you may want to ask them to document the final plan—simply writing FINAL across the top.
For 504 -There are no mandates-regarding time frames—Meaning how long a school can take to get a 504 plan in place as there are with IEP’s. That being said—if your school drags out the process—you do have recourse—which may involve moving past your school district and filing due process or complaints with the Office of Civil Rights.
Some schools do an evaluation of your child with a school psychologist as part of the 504 process. An evaluation is a mandated part of the IEP process but not 504. It is really unnecessary when seeking a 504 because it is not about academics—not about a learning disability—not about behavior—so you can choose to say no—which may halt the process a bit—until you get the school to understand it’s not about any of those things. You may choose to let your child be evaluated. It is free—and the results can show areas that may need to be addressed-like school anxiety.
Document everything. Start a file. From your letter of request for a 504, all correspondence regarding the 504 process, school work that shows it was possibly not your child’s best work due to diabetes (attaching that days BG log to the work) to failures in following your child’s medical management plan—get it in writing and keep it. If you speak on the phone to faculty –after you hang up send an email that starts off with ‘per our phone conversation.’ Documentation can demonstrate the need requested, gives a timeline of the process, ensures everyone is on the same page regarding the student’s needs.
Ready to make your request:
Do it in writing—Send an ‘official’ letter of request for a 504 plan–send a sample 504 plan written out for your child and send in supporting documentation—include the link to the NYS Health Department Children with Diabetes Handbook. http://www.health.ny.gov/publications/0944.pdf
Why? Because this helps the school understand how diabetes will affect the student’s school journey, demonstrates that you know what you’re talking about- you know laws and regulations-and you can refer to what you sent during the 504 meeting.
The meeting is scheduled!
Keep in mind– This process is two entities doing their jobs. You need to remember that because it can feel like a ‘them against you situation’ (most meetings have 5 or more school officials at the meeting, which can make a parent nervous!) Really it’s not–it’s just people at work. School is doing their job—which is to limit liability on the district. These plans are legal documents—and failure to follow them, in the worst case- can land a school district in court. They are also protecting that school budget. (Does any request costs $$.) They care about your child too-and the school district. Remember you are doing your job—the job of ensuring your child’s safety, ability to fully participate and be successful in their school experience. YOU are part of the team! http://www.schoolhealthservicesny.com/faq.cfm?subpage=56
A week or so before the meeting—ask for a draft copy of the plan. Before the meeting compare it to your original request—at the meeting–take time to read the one presented—compare it to the draft, compare it to your original request. You may find– that the request is different from the draft, and the draft different from the presented plan at the meeting. If this takes 15 minutes and they are just sitting there staring at you–keep reading. If they start speaking—say hold on I’m still reading. (Do the same with the official plan that gets mailed to you. The one mailed to you could have different wording or items left off & you will need to ask for that to be corrected to the wording of the agreed plan. Document by sending an ‘official’ letter or email)
Don’t go into the meeting with the mindset that this process is asking for school permission. That is not what you are doing. –The 504/IEP meeting is a TEAM meeting. Remember you are part of the TEAM. You are not asking permission—you are stating your child’s needs as part of a discussion group. Instead of: “Can we write that he can have a juice box on the bus?” Instead say “we need to include an accommodation for eating and drinking on the bus in this plan.” Have documents to support the need with you.
Bring someone with you—not just for the moral support—but to have another set of eyes and ears. You have the right to bring anyone you want to these meetings. http://www.advocatesforchildren.org/sites/default/files/library/section_504_guide.pdf?pt=1
If your child is comfortable with it and won’t be disruptive in the meeting—you may want to include them. There is no law or regulation that says children can’t be a part of the process. If the child is old enough, comfortable enough-he/she is able to voice his/her needs far better than a parent can –because it is his/her diabetes, his/her body, his/her experience. (You don’t want to bring your child if they are not comfortable talking about their diabetes or if it would upset them in any way.)
Let’s talk about some specific hurdles…faced in NYS:
“That’s not what Johnny and Susie do!”
Diabetes affects each person differently—how a child manages their disease, how it will affect their school day—what accommodations they need—each child different. So if the conversation veers off to what Johnny and Susie do in school for their diabetes— “Johnny and Susie don’t have a 504, they don’t do after school clubs unless the parents can come, the school nurse doesn’t go on their field trips-parents do”–get back on track by saying this is about my child, and I would like to stay focused on what my child needs to be successful in school.
If school keeps discussing Johnny and Susie—even when you say the stay focused on my child – think about this: Johnny and Susie’s parents may consider this an invasion of their privacy so you need to promote a stop of discussing other students and change the focus to what your child needs.
“Your child’s is young, they don’t need a 504”
Even if your child is young—kindergarten or elementary—it is good practice to have a plan in place. Your child’s in first grade with a teacher who lets them go to the nurse when they need to, lets them have a juice box, use the restroom—then wham—that teacher is out for whatever reason—having a baby, illness, injury and in comes a substitute who is not so accommodating. There can be staff turnover—you can have the very best school Principal or school nurse—they get transferred to another school or retire—new staff comes in & the dynamic changes— unless you have a plan in place and in writing. That is why you need a written, legal plan no matter what the age of your child is.
An answer to this hurdle is to show laws governing qualifications under 504 and district policies that a child would be breaking in order to care for his diabetes. This is where your homework comes into play. An example: it is against district policy for a child to eat or drink in class unless it is snack time. A child with diabetes may have a low and have to—so a plan in place is needed to document that he/she could break that rule.
“We don’t do 504’s for diabetics”
Show them in writing the qualifications for a 504. A child with diabetes DOES qualify.
“Your child’s getting good grades—he/she’s a good kid—he/she doesn’t qualify for 504”
To qualify under 504 there does not need to be an academic or discipline issue. To be protected under Section 504, a student must be determined to: (1) have a physical or mental impairment that substantially limits one or more major life activities; or (2) have a record of such an impairment; or (3) be regarded as having such an impairment.
“We can’t educate the staff!”
Yes they can—The American Diabetes Association can provide videos and education materials the schools can use for the education-FREE of charge. (Call 1-800-DIABETES) Your school nurse can be trained at the Joslin Diabetes Center in Syracuse, NY—and go back and educate faculty—including glucagon.
They have staff in service days—this education can be done in an hour—and it benefits both the staff and the child with diabetes. Worth an hour.
“Your child can’t check glucose in the classrooms”
“Your child has to go to the nurse for insulin”
“Faculty can’t give glucagon”
YES-they CAN! Students can self manage their diabetes ANYWHERE in the school setting with permission from parents and physician, Faculty CAN volunteer to administer glucagon and receive training from a licensed healthcare professional: http://www.p12.nysed.gov/sss/schoolhealth/schoolhealthservices/Article19Sections.html
“We can’t give any testing accommodations by state regulation”
That is incorrect— state regulations allow for time off the clock, having the diabetes kit, keeping cell phone with student & more! If diagnosis is within 30 days of a test and 504 plan is not written yet—the Principal can put the accommodations in place without a 504. (on a side note—they can say your child needs to test in a room by themselves—don’t freak out if that happens—it is because if the child needs to use their kit, monitor their glucose with the cell phone, eat/drink—doing so may distract other students testing and that’s not fair—so the child with accommodations- may have to take tests, usually just state tests—in a room by themselves)
Important to know: USE OF CELL PHONE: (very important for students using Nightscout or Share:
Keep in mind…
Wording matters –parent requested ‘a trained adult or school nurse available at all times, including extracurricular activities.” That was changed to read “a trained adult or school nurse available throughout the instructional school day” eliminating after school activities…
and leads me to the next point…
Pick your battles. That was an elementary school plan—during this time the student was a scout, in town sponsored sports, in their church youth group—none of those are school activities–so parents let this one slide on the elementary school 504 plan –but documented, by reply email, the schools obligation to provide such an accommodation should the need arise whether documented on 504 plan or not. The door was kept open—should the student really want to join a club or activity—and it was documented.
You should know about extracurricular activities…
Even if it is not documented on a 504 plan—that doesn’t give the school an out. On a 504 plan or not—school has to ensure that your child is able to participate like every other child in that building-if they want to. It is just easier to make that happen when it’s documented.
“The activity is not school sponsored”
(Advocates get this one a lot.) You need to know no matter what organization is running the activity or club—be it the PTA, or the man on the moon—the school has the final obligation to make sure all students have the ability to participate—if the program is advertised as open to all students.
The NYS Department of Education defines ‘school sponsored’ by 6 things:
: (1) direct financial support; (school gives $$$ to the program) (2) indirect financial support;(school advertising, or use of buildings/grounds) (3) provision of tangible resources such as staff and materials;(staff running it, using school supplies) (4) intangible benefits such as the lending of recognition and approval;(Use of the school name in the organization name—like XYZ elementary PTA, on the school website, flyer sent home in backpacks) (5) the selectivity of the recipient’s provision of privileges and resources (if all students are offered the program); and (6) whether the relationship is occasional and temporary or permanent and long-term. (is it a onetime thing—or is this organization offering activities/clubs all the time—for years)
If the school is doing any of these 6—they have to ensure the organization provides the needed accommodation—or the school has to provide it. If the organization or the school cannot or will not provide the accommodation the school has to cease all relationship with the organization.
What this means—if the organization running the chess club can’t provide a trained adult for diabetes care—the school has too—or they have to cancel the chess club.
This is not an easy hurdle—because there is risk—they may in fact cancel the chess club and you may get A LOT of flak for that—so you have to decide—is it worth it?
If they say no– get them to write down the WHY.
Bring a note pad to every meeting—and if they say no to any accommodation that you feel is necessary—give the pad to the meeting chairperson (you should find out who the chairperson is—every meeting has one)—and say “Please write down the districts valid reason for eliminating this accommodation and please sign it.” Schools have a right to ‘reasonable no” You have the right to get the reason in writing. In advocating-I have never had them actually write something down—in response to that request–they have screwed around with where it is written—
which leads me to the next point…
If at all possible get the words ‘see attached’ on the plan in regards to your DMMP and action plan.
What was requested and got a no —was being notified of any contagious illness in the school—20% of the student body—so parent could consult child’s health care team to see if he/she should stay home. They said no—advocate said please write down your reason why—they said how about we put that on child’s DMMP. Advocate said—okay—but how will the staff know to tell parents? Will the DMMP be attached? And WALLA the words see attached are on the plan—legally making the DMMP part of the 504 legal documents.
“We are not putting in unlimited bathroom use or being able to go to the nurse whenever they feel like it— child will take advantage of that”
That is insulting to both the child and parenting skills. Provide documentation of why child with diabetes needs these accommodations.
Be prepared to hear the words—“the 504 is too long”
There is no such thing—it can be one page—or ten pages—there is no limit. Many district’s say –“no one will read it—it’s too long”—Advocate questioned the district representative—“the staff doesn’t listen when the district tells them to read it? Don’t you have training for that?” Plan remained in its original context.
Don’t be afraid or step back on advocacy but no matter what –stay respectful, courteous, and on task—even if you feel the school is NOT. Have meeting after meeting, email after email—refuse to give up…BUT don’t blow a gasket. Losing it—is never what you want to do. If you feel like you want to scream or cry in a meeting—(believe me- I’ve been there!)—say time out I need to use the restroom and take a few minutes to go in the bathroom and calm down. Losing it gives the school a valid reason not to help you. Crying does not help. I go into every meeting with the mantra—fake it till you make it. If you go in—educated—it’s easier—because you are not relying on the school to give you information –because in many cases—they don’t know the laws and regulations covering a student with diabetes, or the complexities of this disease. You NEED to go in knowing what you need to know. This is not about like or dislike, it’s not personal—though it sometimes feels that way—this is about ensuring your child is safe in school and able to participate in the whole school experience. Parents and schools are co workers and have to work together. Not about you or the school—it’s about the child.
When the PLAN is in place:
The 504 plan is not a magic wand—I wish it was! You get that plan in place—you still need to always follow up. An example is NYS testing—a week before write an email asking how they plan to have your child take the state test, while providing accommodations. School may not reach out to parents to tell them how the test will go down—parents should ask. That’s okay. That’s follow up. That’s teamwork. A parent received this response this past year—‘he/she will take it with the class, check BG before—but won’t be allowed to have diabetes kit.’
Advocate questioned in writing… ‘see line such and such of his/her 504—allowing him/her to have his kit—and time off the clock if he/she needs it. ..and then added this … because whenever possible—demonstrate team approach because that is what it’s all about— ‘this is what parents are doing at home to assist as best as possible that he/she will be able to take the test without a diabetes issue…early to bed, solid breakfast, ride to school instead of the bus.’ This helps show that it is a team effort—parents are behind the school, and school is behind both student and parent. Child took the test without a problem, and kept the kit with them during the test.
Teach your child the plan as much as possible…
As parents we teach our child to be respectful of adults –do what your teachers say—but as parents of a child with diabetes we have to balance that with- do whatever it takes to stay in the upright position. Make sure he/she knows and understands every accommodation so he/she can keep themselves safe. Make sure he/she knows—if he/she takes advantage of these accommodations—there will be trouble!
Talk to your child about the school day…
However it works for you—to find out if the plan is being followed… try to do it without being diabetes specific:
How was Johnny’s birthday treat? I didn’t get it. How come? They wouldn’t let me have it. Did you have insulin for it? Yeah—but the teacher said I was too late to eat. The food was put away by the time I got back to class.
I heard Mrs. Teacher gave out candy today…Yeah she gave out candy for everyone to bring home—can I have it now? You bet!
I heard you had a lockdown drill! Yeah it was awesome the fireman came—they said I was smart to have my kit in my hiding spot.
This is how you know when to address a problem—got insulin but not the food–but it is also how to know when to write a thank you—which is very important—for things like having everyone bring the treat home. You don’t want to get a reputation as just a complainer—like diabetes police—you want to be a team player! Sending thanks goes along way. So does backing the teacher when your child makes a bad choice. Child forgets to turn in homework, talked in class when he/she wasn’t supposed to, things like that – when not diabetes related—back up the teacher! If child gets an ‘oops’ note that the parent has to sign- sign it—then on the back have child write an apology. Small ways to show this is a team effort.
Volunteer if you can…
Be the room parent, join the PTA, work in the library, go to school board meetings. . Show your face—not related to diabetes. This helps in many ways—you are in the building seeing how they work, how they interact with your child, and who is in charge of your child at different parts of the day. You are at school board meetings-so you will be aware of staff changes, policy changes, and the like. It also shows that you back the school district –you care enough to be involved and lend that needed helping hand.
It’s a never ending process…
As your child grows and changes—the plan is going to need to change as they are.
My last suggestion…
When an issue is resolved –move on—and get the school to move on too. You are going to continue having these plan meetings throughout their journey to graduation. You will have many meetings after that first agreed upon 504..and a few times someone in that room may bring up an issue that’s resolved—already on the plan—don’t let that happen—interrupt and say—we’ve moved on from that –what we need to talk about now is XYZ accommodation for the next school year.
My experience is this process can be challenging to say the least. My best advice is—get educated on the process and call the American Diabetes Safe at School line—1-800-diabetes- for assistance or questions. Don’t wait till the problems pile up—get help, get advice, get educated—right away.
Wishing all children a safe and successful school journey!