Call in…diabetes

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I don’t know about you, but I often catch myself tripping over my words when calling Frankie in absent from something, when it’s not illness but type 1 diabetes. It’s so much easier to report “He’s sick” than it is to say “He’s type 1 diabetes.”

But, he’s NOT sick. He is out because diabetes is not playing nice. There is no reason we can pinpoint sometimes-his glucose level is high, ketones are present, or he keeps running low (low glucose levels) and all of this happens because-that’s life with type 1 diabetes. The why? Could be a growth spurt, puberty, the weather, his emotions, sign of an illness to come, or the earth rotating on its axis.

So I stutter when placing the call. “Frankie will be out today.” “Oh, sorry to hear that, is it the flu?” “Um, ah, um, it’s diabetes.” Often followed by a need to explain what that means. “It’s not safe to send him because his levels are in flux.” “It’s not safe to send him because his levels are high and he has ketones.” “Not safe to send him because he’s been having sudden and extreme lows he can’t feel.”

“He’s sick” does not do justice to Frankie’s reality, and though saying it makes the call effortless, it doesn’t feel right or fair to downplay the obstacles this disease throws his way, and the immense fortitude he has fighting to get over those obstacles.

This disease is strange and complex, and Frankie navigates the mountains and valleys of living with it, but sometimes he must call in- diabetes.

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Happy New Year!

He’s out celebrating New Year’s Eve.  A big deal. To understand why…let’s start at the beginning…

Six years old and diagnosed with this crazy disease-type 1 diabetes. Those early days- we parents figured the insulin doses, kept the time for glucose monitoring, figured the carbohydrates in the food- carefully measuring each bite on a food scale or with measuring cup, we gave the injections, and  we stuck the needles in his tiny fingers to test the drop of blood.  We took him to parties, play dates, and more.  We were his shadows, perhaps looked at as helicopter parents by those who did not know he had diabetes or what type 1 diabetes is.  We shadowed him so we could be there for all the ‘stuff’: carb counting, blood checks, injections, and low/high blood glucose levels.  We tried every minute of every day to build the belief that we, he, could do all this disease requires for the rest of his life, while living his life.  We did what we needed to do to make that true.

We were faking it. Those early days, months, years-we were scared.  Every food count, insulin dose, blood glucose check—we doubted our abilities as parents to do this, not just the medical stuff, the life stuff. We wore masks –‘can do’ masks –every minute of every day —because he was watching.

As he was watching, he was learning and taking it all in. It never appeared as if he was as scared as we were. The hate for the disease was evident, but not fear. He never seemed to doubt his ability- to not exactly conquer this disease—rather put it in its place. As we were watching him, we were learning and taking it all in too.

He was braver than we were, still is. While we played at making it seem like no hurdle was too big to jump—he actually acted on it. He began to check his own glucose, give his own shots and he tried, everything, never pressing pause. Summer camps, scouts, sports, band, and more…some worked out, some ended in failure, but even the not so great endings he’d say “It was good while it lasted,” and damn he meant it.

He taught us and continues to teach us as we watch him navigate life with diabetes. The first lesson –even if you despise something, you can accept that you must do it, gracefully.  The second lesson-try. Do not fear the end result, don’t even think about it. Plan, plan some more, carry a juice box, and go for it. When it doesn’t work out, another lesson, find the bright side.

All this has brought us to this New Year’s Eve.  A big deal. He is doing what we pretended to do those early years—live –without fear.

Happy New Year!

Diaversary

Dear Frankie,

It is Diaversary week. August 23, 2010 you were diagnosed with type 1 diabetes. We will not overlook this day- we will celebrate all week, not the diagnosis, but your spirit and positive attitude! Our young boy who had no choice in losing a carefree childhood- forced to take on a monster of a disease and overnight grow up in ways that seem so unfair.  You don’t think about it that way and I am amazed and proud of you for that. I remember you grabbing the lancet day 1 of living with diabetes and saying “let’s just do this!” Sticking that needle in your tiny six year old finger and checking your glucose level with the drop of blood. I remember—you were much stronger than me.

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I wanted to wrap you in bubble wrap and keep you in sight 24 hours a day. I wanted to fix it—and was torn in bits because this disease has no ‘fix.’ I had a fear inside me that at times was so overwhelming I would run into my room and close the door -bursting into tears. I never wanted you to see my fear, I don’t know if I was good at hiding it, but I do know you swallowed yours and carried on like the warrior you are. You, since diagnosis, have looked at this disease like cards you have been dealt, and darn it—you are going to play! Not only are you playing—you are winning.

We have talked over these years regarding how you feel about living with type 1 diabetes. Your answer is always the same “I hate it, but I have to do it.” When facing the difficult –you always find the silver lining—like when you had to leave scout camp early because of dangerous glucose levels you said “It was fun while it lasted,” and at the hospital “they have TV!” You have been called ‘an old soul,’ and ‘an adult in a kid’s body.’ My favorite description of you and your life with diabetes came from your teacher this year who said “You handle it like wearing a pair of glasses.” That you do—and you amaze me.

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You have taught me more about living to the fullest and savoring every second than I ever knew before. You have shown me what courage looks like and that love, hope, and determination can overcome the most brutal challenges. You have taught me to never give up and to always look for the rainbow on cloudy days.

You are my SUPERHERO! From six years old to the verge of thirteen—you are owning this life that you have been given and I am so proud of you.

Celebrating YOU during Diaversary week!

Love you,

Mom

“Know thy self, know thy enemy. A thousand battles, a thousand victories.” Sun Tzu

 

To all the ‘Fathers’ in Frankie’s life…

To all the ‘Fathers’ in Frankie’s life…

Dad & FrankieDad: You were the first to hold him in your arms the moment he was born and again, on your lap, when the doctors told him he had type 1 diabetes.  You are his foundation.  You demonstrate persistence and possibility. He wants to ride 40 miles on a bike, you ride beside him. He needs help with homework after missing school due to diabetes, you sit with him and help him understand and get it done.  He wants to try-basketball, scouts, LAX, hiking, cycling, and more-you support and encourage -you give him the chance by being right there with him. He questions:  “Why me?” and you say “Why not you?” and show him he has what it takes to conquer all that comes before him. You work hard to pay for all he needs to live with this disease-overtime, part time jobs, odd jobs, all and everything—you put your children first-you make life possible. You sit at health fairs, walk in parades, and go to dinners, seminars, and fundraisers in the name of diabetes-for HIM. You sit on the edge of his bed at night to check his glucose level and watch him breathe.  You are his calm in the storms that come. You are his shore when he feels lost at sea, just by being constantly there.

10269643_10201648507726681_7704754684564013820_nGrandpa: You are like no other-your bond so special. You don’t focus on his health when you are together-you focus on who your grandson is and share with him who you are.  You talk sports, fishing, family and history. You tell him about your life and you listen to him talk about his. Without words he knows you would walk across hot coals for him, he knows you love him, because you show him. You are the ‘strong stock’ he comes from…he gets his determination from you.

Scout Dads: Though Frankie has turned to sports instead of scouts, you Scout Dads gave him building blocks that will last a lifetime. Always going above and beyond to include Frankie- sacrificing time with your own to keep him safe in your care. The building blocks of character, hard work, and how to try despite fear…you gave him those and helped create who Frankie is today-a strong young man.

His male teachers/coaches:  You have seen beyond what he has to do to stay alive, seen him beyond diabetes and for the person he is becoming. You have made him an explorer of science, technology, music, athletics, the arts, and more. He knows the extra miles you go for him-learning about diabetes, learning how to inject glucagon, and he also knows you never mention it, never ask for thanks. He knows you do it all for him, and in turn, you are teaching him to do for others as well. This is no different than your female counterparts, except to a young man navigating so much in his young life. You are role models, an example of all he can become, because you are male too.

His Brother’s in Red, The Men of Tour de Cure: He sees you in action-on your bikes, with your families, testing your glucose, injecting insulin, and embracing life. Frankie knows all the ‘bad parts’ of living with diabetes, knows complications can happen, and knows friends who have lost their life due to this disease. You show him-live with all you have inside anyway, do what you need to do every day, and never say never. More than any other person in his life-you give him a demonstration of resilience. You are his Superheroes in red, his brothers on this journey, and the men who make him believe in himself because he sees you believe in yourselves.

On this Father’s Day, I salute and thank each and every one of you. Happy Father’s Day!

Dear Brother,

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Dear Brother,

It takes a big person to say they are sorry-I thank you for saying it & accept your apology. Everything you did/said—are the reasons we do what we do—work as hard as we can in support of the American Diabetes Association and their mission: “To prevent and cure diabetes and improve the lives of all people affected by diabetes.” If our efforts have given you a change of heart—you are now an example of advocacy at work.

I often say the public misunderstanding of this disease is a tribute to the 29 million Americans living with some type of diabetes. (There are many kinds—one tree named ‘diabetes’ with lots of thorny branches-the ‘types.’) These SUPERHEROS face their hurdles—ridicule, exclusion, blame, mockery, and unrelenting medical needs—with determination, resilience, tenacity and a smile on their face—never letting you see them sweat it—bravery in our midst.

Many of the 29 million American’s living with diabetes are children, and they are where my heart is. As a Safe at School Advocate for children with diabetes in NY—this year alone I have navigated the difficult terrain of school bureaucracy for children across our state who were told “do not come to school because we can’t take care of you,” “you can’t go on field trips,” “you can’t join after school clubs,” “you can’t ride the school bus,” “you can’t do THAT (perform their medical care) in the classroom!”  and the scariest “we are not going to follow your medical plan, it’s too complicated.” Children with diabetes must face the reality that this disease could kill them and insulin—is not a cure—it is a band aid, and dosed incorrectly—insulin could kill them too. They must face this reality while facing (and fighting) the constant message of CAN’T and in some cases this year—public mockery of their disease by the very people parents must entrust these children to everyday-school staff.

There currently is no cure—but research is bringing about many things that help. In the works—the artificial pancreas, smart insulin, the insulin patch, and more. All amazing- but only tools to assist in making living with diabetes easier—not a cure, just more costly tools, that many of the 29 million will never be able to afford should they come to fruition. I hold on to hope—that research will someday lead to a cure. God willing-it happens in my son’s lifetime.

You are one of many ‘misunderstandings’ I have faced in these last 6 years. One of many- my son has faced- his sister and father too—because we are all in this together. When one is diagnosed—all are diagnosed—because it absolutely changes everything in life as you know it and you must struggle to find balance in a ‘new normal.’  In the early days—a school district of our own that didn’t understand—a hurdle crossed—and now they are a school district that other districts should look to as an example of how to safely and successfully assist a student with diabetes on their school journey. Where once they told him “CAN’T” they now say “How CAN we?”

As a parent of a child diagnosed at age 6, I can tell you wholeheartedly; this disease is so much more than “a little poke to his finger.” I go in his room in the dead of night, every night, to check his levels-the first thing I check- is if he is still breathing. A disease that never sleeps, never gives up its quest to knock you down, take you out.

This disease chose the wrong Mom to mess with, for I will never give up either-in helping my son be all he can be- despite the mountains he must cross. Giving him the self confidence to face the ridicule, mockery, and unrelenting medical needs-bravely, respectfully, and valiantly. I will never give up—being a voice for children that need one- up against exclusion, misunderstanding, and bullying. I will never give up-supporting those 29 million Americans and their families-who deserve so much more than jokes at their expense, shaming because they have a disease they do not want and certainly did not cause, and stress-because they can’t afford the overwhelming cost of staying alive with this disease.

What I already knew, but has been pounded home these last 6 years, is EVERYONE has a struggle they are dealing with, be it a medical condition or a difficult life circumstance. We must look at each other in this world without judgment and instead look at each other with compassion. That smile on someone’s face may be hiding the scariest of predicaments. We need to be the light—shining brightly for each other—we are all in this together after all.

I loved you through it all, and always will.

Your Sister

It’s annual 504/IEP plan review time! Tips/links for a successful plan in NYS & what to do if it’s not so successful!

504 photoIEP-SHirt

 

THE BASICS: 

KNOW THIS: Per The New York State Education Department:

  •  CSEs include individuals who know the student and his/her unique needs and who have the authority to commit the school’s resources to address the student’s needs.
  • The plan should appropriately address all the student’s unique needs without regard to the current availability of needed services.
  • Students’ needs determine the allocation of personnel and material resources.

These are TEAM meetings-YOU are part of the team! Do not go into this process with the belief you are asking permission. You are part of a team discussing/determining needed supports/services-use language that supports you as a team member.  Instead of  ‘can student have an ipad for xyz reason’ say: ‘student needs an ipad for xyz reason.’

http://www.p12.nysed.gov/specialed/publications/policy/parentbroch.html

 

KNOW the team members. Find out: who is the administrator for support services in your district? Who is your child’s school psychologist, counselor, OT, speech, vision, etc? Find them on your district website.

 

ALL correspondence should be in writing. If you have a verbal conversation—be it by phone or in person-as soon as possible afterwards-write a summary of the conversation and send it to the ‘team’ by email.(The ENTIRE team needs to be current on all/everything discussed. Keep the ENTIRE team in the loop.)  The email should begin: per our conversation on (date), at (time), with (person). End the email with this request: ‘Should you disagree with my interpretation of the conversation, please email me back with clarification of the conversation.’

 

Keep ALL documents, correspondence, and a notebook . Start a file and save everything. You may need to refer to items later- as this is a journey to graduation.

 

Before the meeting– Consider: 1. What are my child’s strengths and weaknesses? 2. How does my child’s disability affect his/her ability to learn/be a part of the school community? 3. What short and long term goals should be set for my child? 4. What services/supports does my child need/are available to assist in his/her ability to learn/ be a part of the school community? 5. How can we (school and home) work together to obtain needed services/supports for my child? 6. Is my child’s present school environment appropriate to meet his/her needs? 7. Is it inclusive?

 

Consult student’s medical team/home support team before the meeting. What do they think will impact the student in the school setting? What supports/services do they think should be in place?

 

Ask your support groups-what has been helpful to their child? What support/services do they have in place? Gain knowledge through those in the know about what is out there in different districts for students.

 

Think outside of academics. Plan for everything: What about lunch room, playground, field trips, after school activities? Transportation? What happens during a lockdown, fire drill, emergency? What are medical needs? Medication/care times?

 

 

Gather supporting documentation of need for supports/services -from your child’s medical team, services teams, outside evaluations, ect.

 

At least a week before the meeting-send any/all items of services/supports your child needs in writing to the team. (email is okay) Example: Student would like to join afterschool club, but will need an aide to participate. You need  in writing on the plan “an aide will be provided for extracurricular activities” Provide supporting documents. http://www.p12.nysed.gov/part100/pages/1002.html

 

Read all and everything on that school district website. Search that website with a fine tooth comb & KNOW it. What is their mission statement? Statement on inclusion, supports, services, extracurricular, and the CSE process? What’s in the code of conduct? READ DISTRICT POLICY! KNOW the school district budget-how much is allocated to support services? What technology is used in your district? What is the staffing  for support services in your district? What is the current staff/student ratio? Print out what corresponds to your student. Bring copies of all pertinent website info to your child’s CSE meeting and be prepared to discuss them.

 

Know laws and regulations. They are complex and ever changing-so—search the State Ed website. Search the Office of Civil Rights website. Search the US Education Department website. Call the local State Ed office (315) 428-4556—they are great about answering questions. Google exactly the service or support you are looking for and find precedents where it has been put in place. State Ed has a step by step IEP process- on their website-http://www.p12.nysed.gov/specialed/techassist/CSE-IEPprocessQI.pdf  use it to gain information on what should be discussed and determined.  Bring copies of all pertinent laws, regs, etc. to your child’s CSE meeting and be prepared to discuss them.

 

http://www.p12.nysed.gov/specialed/idea/regsanalysis.pdf

http://www2.ed.gov/policy/rights/reg/ocr/edlite-34cfr104.html#D

http://www.p12.nysed.gov/specialed/publications/policy/parentguide.htm#Evals

http://www.p12.nysed.gov/specialed/publications/iepguidance/intro.htm

http://www.p12.nysed.gov/specialed/techassist/CSE-IEPprocessQI.pdf

http://www.p12.nysed.gov/specialed/formsnotices/

http://www2.ed.gov/policy/landing.jhtml?src=pn

http://www.p12.nysed.gov/part100/pages/1002.html

 

Know the difference between a 504 plan and an IEP plan. 504 is NOT about academics or behavior issues. A child may qualify for 504 instead of an IEP.

http://specialchildren.about.com/od/504s/f/504faq2.htm

 

 

AT THE MEETING:

 

Keep in mind– This process is two entities doing their jobs. You need to remember that because it can feel like a ‘them vs. you’ situation. (most meetings have 5 or more school staff at the meeting, which can make a parent nervous!) Really it’s not–it’s just people at work.  School is doing their job. 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!

 

EVERY meeting-bring someone with you! Bring your spouse, a friend, a neighbor-SOMEONE! These meetings can be 5 or more school personnel with parent. As a parent, you may never have MET any of these people before. That creates nervousness and awkwardness right from the start. You NEED another set of eyes and ears to HEAR what you may not. To interpret what they HEAR as it may be different from what YOU hear. This person can take notes, remind you of what you wanted to discuss, and be a support to help alleviate the nervous and awkward.

 

Include your child in the meeting as appropriate. By law/regulation the student should be a part of the process if the student/family agrees. If the student is comfortable with attending-consider including them in the meeting.

 

RECORD the meeting! (Most cell phones can do this or bring a tape recorder.) Do not rely on minutes written by a member of the team. Do not attempt to keep minutes yourself. All team members are trying to participate-keeping minutes can distract participation. You can use this later for review which is helpful – questions may arise later-that you did not realize at the meeting. If only one parent can attend meeting-recording gives the other parent opportunity to listen to the discussion-and they may have questions. You CAN record the meeting, provided that you have given the CSE team notice of your intention before the meeting begins-UNLESS your district has a written policy prohibiting this. If you are receiving any resistance to recording your child’s IEP Team Meetings, ask for a written copy of district policy.

 

http://www2.ed.gov/policy/speced/guid/idea/letters/2003-2/redact060403iep2q2003.pdf

 

Do not agree to the plan at the meeting. Ask for a draft copy of the plan and state you will be reviewing it at home and will get back to the team. Give yourself time to digest all the information, consider the wording of the plan, and then respond.

 

Wording matters: These are legal documents. Read the plan carefully. Consider: if you were a school staff member-would you understand it? Is it clear and concise-eliminating ‘interpretation’? (When the plan is agreed upon and the final plan mailed to you–check the wording again-every line! Sometimes it is different from the agreed upon wording, or items determined are missing–and you will need to have that corrected.)

Things that should make you say ‘Hmmmm???’:  

 “We don’t do that in this district.”  That is not how it works. Determinations by law/regulation are based on student need-not on what a district does or doesn’t do. If this happens-make a call to NYS Education Department’s local office:  (315) 428-4556 explain that you have received this answer and ask them to make a compliance call on behalf of the student. Have the district administrator of support services and/or district superintendent’s  name and phone number to give them.

“We don’t do that for other students.” Also-not how it works. Determinations by law/regulation are based on the individual student -not on what a district does or doesn’t do for other students. If this happens-make a call to NYS Education Department’s local office:  (315) 428-4556 explain that you have received this answer and ask them to make a compliance call on behalf of the student. Have the district administrator of support services and/or district superintendent’s  name and phone number to give them.

“We do that anyway, we don’t need to write it in the plan.” It’s great if something is ‘done anyway’ but you NEED it written on the plan because: staff turnover-people leave due to new employment, illness, many reasons, substitutes-people get sick and subs come in and may not ‘do it anyway.’ You need things written on plans so no matter WHO is on staff–be it a substitute or new staff member-EVERYONE is aware of supports/services in play. These are legal documents, that once written-districts are obligated to be follow. Not written-no obligation on the part of the district to provide any ‘we do it anyway’ support/service. If they ‘do it anyway’ there is no reason why it shouldn’t be written on the plan.

“Trust us” This is not about trust or distrust-this is about student needs. Again, These are legal documents, that once written-districts are obligated to be follow. Not written-no obligation on the part of the district to provide any ‘trust’ support/service. Trust goes both ways-and is never a reason something shouldn’t be written on the plan.

http://www.p12.nysed.gov/specialed/idea/regsanalysis.pdf

DISAGREEMENTS:

If the district says ‘NO’ ask them to write down the ‘WHY.’ Bring a note pad to every meeting—and if they say no to any support/service 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 support/service and please sign it.” Schools have a right to ‘reasonable no.’ You have the right to get the reason in writing.

 

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. Go up the ladder, 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-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. 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 or the complexities of the disability. You NEED to go in knowing everything you possibly can about this process.  This is not about like or dislike—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 must to work together for student success. Process is never about parents or the school staff—it’s about the student. (Sometimes easier said than done-and you will need help…see info following)

 

 KNOW the ‘chain of command’ -from building level right up to the Superintendent, to the School Board. Past them to your local representatives-the town board, assembly member, senate representative, State Ed, and Office of Civil Rights. Know the chain of command and be prepared to go up the ladder.

http://www.p12.nysed.gov/specialed/formsnotices/samplecomplaint.htm

http://www2.ed.gov/about/offices/list/ocr/complaintintro.html

 

Reach out to other parents in your district for advice and ideas. Are their children having problems? Team up to discuss concerns and ideas for resolutions with your school board and superintendent.

 

Call the local office of NYS Education Department to ask questions, receive guidance, ask them to make a compliance call on your child’s behalf.  (315) 428-4556

 

Seek FREE legal advice from: Disability Rights of New York 518-432-7861.

 

 

Together we can do so much…

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I am a student advocate for children in NYS. Recently I was in attendance at a CSE (committee on special education) meeting when an administrator said to me “I’ve never seen you before, who do you work for?” I replied “I work for students.” “Hmmm, what are your credentials?” administrator asked. I was tempted to pull out a photo of my 12 year old son, but instead replied “5 years of experience.”  “Advocates usually make things adversarial” said administrator. “Advocates aren’t called upon unless things are already adversarial,” I said, and turned the talk at the table back to the important matter at hand-the student we were meeting about.

In my fifth year of trucking across this great state, New York, in an effort to ensure student rights, needed supports and services, and getting home/school communication back on track- an interaction like this one is no big surprise. Most administrators don’t hug advocates. That is a good thing. I view one of the main roles of advocacy as taking the heat off of the parents, and make no mistake, by the time I get there—the heat is usually a full out 5 alarm fire. I want that off the parents, because my other role is to rebuild the communication, trust, and teamwork that this fire has destroyed. It is easier to do that when the administration puts the idea of ‘adversarial’ squarely on the shoulders of the advocate.

So what’s there to argue about? Oh so many things!  Often there is an underlying current of ‘us against them.’ I can’t say where this comes from or why it’s there, but you can feel it and want to pull up a chair and ask it to sit down. When I feel it, as an outsider in a school system, I am often wondering how it feels to all the insiders around the meeting table? It must be stronger for them, no doubt, and I wonder if they are also thinking who invited this in? Knowing how it all works, the ‘process’ is set up that way when you think about it. Parents, with a child with any need, are sleep deprived, worried, scared, and sometimes feel isolated because what they deal with everyday keeps them away from PTA, social groups and the like-they simply do not have time to mingle with the school community. At the CSE meeting-parents, sitting in this room, alone, amongst a bevy of school personnel, some who they have never met, clueless about how any of this ‘process’ should be going down except for what they read on a website, on the internet, or heard from others. To this parent there is only ONE child. Their child- whose care is all consuming, there is grief, huge medical bills, and fear. School staff, in this process, are often underfunded, overworked, have sleepless nights, and worry about their jobs. At the CSE meeting-school staff: some have never met this parent, or the child the meeting is about, often just as clueless as to how this ‘process’ should unfold except what they are told by those above them in the system and from the school’s legal team. This child is one of many. Many schools work under the belief that these children cause budget concerns, staffing issues, and liability. All of this invites the invisible guest: misconceptions, misinformation, gossip, and the “adversarial” is there even before all parties take a seat.

There is process and procedure, in other words, regulations and laws in place that preserve the rights of a student with needs and step by step process on how to ensure these rights in the school setting.  These are complex and ever changing. In my experience, often school staff does not even know what they are, let alone understand them, yet they are responsible for informing the parents.  It is the school’s job to inform the parents and without knowledge and understanding themselves, that is impossible. Right out of the gate, the horse has already fallen down.  Once down, it’s very hard to get up and find the finish line.

There is often decision making based not on the child, and what the child needs, but based on ‘what we’ve always done,’ ‘budgets,’ and ‘Wizard of Oz’ mentality of administrators. ‘Adversarial’ is often alive and well as soon as a referral for a 504/IEP comes through. Statements like “we don’t do that” “XYZ child’s parents haven’t asked for that” and “this is not open for discussion” are the matches that light the fire, and create calls for advocacy. Decisions on ‘classifying’ a student are by law to be team decisions, but statements like these demonstrate lack of following law, and knowledge of what the laws are.

I used to focus all of my efforts on parent training sessions – educating parents on all the ‘need to knows’ when travelling the journey that is the support services process. In recent months I have turned my efforts to educating our educators, because I have seen such a need in this area. Parents soak these sessions up like sponges, some schools, not so much.  Some take offense, where no offense is intended, and draw a line in the sand that says WE KNOW ALL.  That is unfortunate, but my hope as an advocate is that these ‘sand drawing’ schools will see the success in schools that embrace these sessions with open arms, see that it helps reduce those 5 alarm fires, and see that it reduces ‘adversarial.’

I often hear “You’re such a Pollyanna,” “You’re wasting your time,” and a favorite “Your son is doing fine now, so why do you keep this up?”  All valid questions, depending on perspective, and I try to answer them. I want to stay ‘Pollyanna.’ It takes effort sometimes- up against a closed door with bloody knuckles from knocking on it so much, but just like ‘Pollyanna’ –I believe if together, family and school, we traipse through the muddy waters, we can find the shore of safety, inclusion, and success for all students.  Am I wasting my time? I don’t think so, even though some of my work involves months, even years, of constant negotiating and ‘adversarial’ in the end-this is about a child’s life-now in school and their future after graduation.  All children have gifts to share, but for some, they are held back from sharing them- due to the bureaucracy that can be the support services system. However long it takes, it is not a waste of time to be the voice for a child who needs one. As far as my son, he is doing more than fine-he is thriving! Our family owes his success to a group of advocates from the Safe at School program of the American Diabetes Association.  I ‘keep it up’ because I have been in the shoes of a parent at wits end, feeling there was nowhere to turn, crying every night, and filled with worry for their child’s future. I know the frustration, disappointment, and isolation of riding the roller coaster called support services and I learned from the best of the best how to hold on tight and navigate the hills and plunges to find level ground. I ‘keep it up’ because I don’t like how things work for anyone in an ‘adversarial’ support services process-the child, the parents, and the school staff. Again, call me ‘Pollyanna’ but I think we can change the system. I know some school districts already have-and we need to learn from them.

The title ‘advocate’ means mediation, sharing knowledge on process and law, and building the bridge between school and home. It means honesty-when you feel a parent needs to give a little in the process and/or when a school needs to give a little. It is knowing not every request a parent makes can get a ‘YES’, but understanding the ‘messaging’ of ‘NO’ without sharing a valid reason for the ‘NO’ is not best practice.  It is knowing not every ‘no’ is valid, and fighting to change it.

At the end of the day all of this ‘process’ is just paper-the IEP’s, the 504’s, the action plans, the laws and regulations-and they are only as good, as great, or as exceptional as the effort to follow them. Bottom line is this-we need to listen to each other-student, family, and school. Really listen. We need to put students first in the support services arena. We need to work together and tell ‘adversarial’ there is no room at the table. We ALL need to know the laws, regulations, and work with them, not against them. We need to take the efforts off of the ‘paper’ and put them into action.

“For some disputes, trials will be the only means, but for many claims, trial by adversarial contest must go the way of the ancient trial by battle and blood. Our system is too costly, too painful, too destructive, and too inefficient for a truly civilized people.”

Warren E. Burger