It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

I'msorryDear [             ]:

I’m sorry.

I’m sorry to have ruined your day, angered you, or caused your supervisor to watch you closely.  I know what bad days, frustration, and job pressures feel like.  It wasn’t my intention to cause you problems.  It may not feel like that to you, but it’s true.

I know that –when you aren’t busy being the person I had to get unpleasant with –you’re probably a very nice person.  I’m sure that your family loves you, friends think you’re wonderful, and you’re an active church member.  If circumstances were different, we might be friends.

But the great person whom I’m sure you are intersected with a road I’m traveling to meet the needs of my special needs child.  To put it simply – you got in my way.  In some way significant to my child, you failed to do your job.  Do I think that makes you evil?  No, I think that makes you human.  But the issue isn’t how I feel about you.  The issue is a vulnerable little boy who cannot speak for himself – my vulnerable little boy.

There are a lot of reasons why you might fail to do right by my special needs child.  You may be overworked.  You may not have enough resources.  Your boss may be a jerk—or clueless.  You might not have the knowledge or time to do what is being asked of you.  Most likely, you are simply a part of an educational system that has been broken for so long no one knows what it is supposed to look like when it works.  Most likely, you probably already know that – but fear of rocking the boat or drawing parental attention caused you to go along with what you knew to be wrong.  You may feel helpless about that and wish it were different.  I’ll let you in on a secret – I feel the same way.

But feelings and wishes – over truth and action- are luxuries I don’t have.  I can’t blame it on the system, lack of money, or others and go about my day.  You see, this child is mine.  And you and I know all too well who will step forward to advocate for my child if I don’t – no one.  Not really.  They’ll think he’s adorable, sign him up for an hour of therapy or so a week, and set goals for him low enough for him to achieve in a year. They’ll finish his IEP in 15 minutes and tell themselves they’ve done their jobs.

But it won’t keep them up at night.  It won’t drive them to learn and do more.  They won’t feel a sense of panic as precious time is lost.  It won’t incite their indignation.  It won’t be their child, so…

It won’t be personal.

But his well-being is my purpose for being here.  Having made the decision to have and raise a child, he shot straight to the top of my priority list – even if he isn’t at the top of yours or the system you work for.  If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.

So, unfortunately, that’s where your path and my path have crossed.  I’m sympathetic to whatever caused you to be here.  But my job is incompatible with looking the other way while you don’t do yours.   No matter what the reason.  It’s just that black and white – even if it isn’t completely your fault.

This isn’t going to change anything.  I’m still going to be there.  I’ll still be watching closely.  I’ll be polite, but I will be that parent.  The parent who writes the letters, makes the phone calls, requests the records, researches the issue, analyzes the data, knows the law, and makes it her mission to know more about my child’s disability and issues than you or anyone you work with.  Which means there may come a time when his needs and rights are in conflict with your convenience, budget, or the status quo.  Again, I’m sorry about that.

But I want you to know– it’s not personal.

Update:  This post has touched a nerve with some folks who may not be familiar with my writing or blog.  This post is not anti-teacher.  Teachers aren’t usually the problem.  I know.  I AM a teacher.  Most are wonderful, including my son’s.  I’m talking today about the folks who make the real decisions that affect special needs students and their classrooms.  And, while I would never be rude with anyone, I can and will do whatever is necessary-within the law – to ensure my son receives what he has a right to under federal law. 

89 thoughts on “It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

  1. resa

    this is brilliant; word for blessed word the thoughts I have chased around in my head at every meeting, appointment, survery, conference, negotiation, arbitration I have ever attended since my son was 4 years old and entering a system of care that is more autistic than he is. Thank you for articulating my feelings so eloqently. I used to be polite, but then i have a son with autism in a system barely able to support him.
    Advocate on ward; xox ~ resa

      1. Margaret

        Oh my gosh My family have just left and although we didnt have an argument I feel that they dont understand my little grand daughter with special needs , she is soo precious but does get jealous when we give our other grand children some of our time . If only they understood as much as we have had to learn about our grand daughter Jessica who I might add lives with us and has done for over 11yrs .People expect perfection and just dont think about how unique this young lady is , she has feelings like all others and unfortunately cant explain to others how she is feeling .. I want to explain to others but they really dont want to listen they dont understand. . thank you for your eye opening e-mail .

  2. amy

    To me, there is a big difference between advocating for your child and becoming the “problem parent” who teachers actively avoid. This blog seems to be in the latter category. Blaming a teacher for systematic failure is not helping your child. Assuming that teachers aren’t up at night worrying about their students is just false. The vast majority of teachers are overworked, underpaid, and they go to work every day because they love working with your kid. They are not the enemy.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Amy, you probably followed a link to get here and may not be familiar with my other writings. I actually AM a teacher. I know very well how hard they work and the job they do. I know many of them worry about their students; I know I do. Teachers are rarely the problem — which is why I didn’t address this specifically to teachers. However, having spent more of my career not a special needs parent and only four as one — I can tell you with complete confidence that the kind of worrying you do about a student is not at all the kind of worrying you do as his parent. And, unfortunately, the majority of people who are really affecting my child’s education – the decision makers – don’t actually really know him at all. So, unlike his teacher, they aren’t emotionally invested in him. That’s who I’m talking to here, not his teacher. His teacher happens to be a gem.

      1. Angela

        I love this letter. I am a teacher as well and I know that no matter how hard I try, I just don’t have the time and resources to meet the needs of all my special needs students. My son has autism and I work hard and worry about his needs being meet. This letter is perfect. You are absolutely correct, if we don’t advocate for our sons, no one will.

      2. Samantha Veasey-Smith

        I agree totally it is not the teachers, it is the system and the decision makers that no little of the child whom they are making huge decisions about. I too am a teacher of children with SEN but also a parent and as such I find it even more frustrating as I know what can be done for some that is not done for others!

      3. Frustrated SPED teacher

        Amy,
        Thank you for putting this out there! As one of those Special Education teachers that are up at night worrying about my students I sometimes I feel targeted about things I cannot control because guess what….it always trickles down to the teacher. Parents need to understand also that your child is not the only one I teach all day. I cannot email, text, etc throughout the day about your child’s behavior, etc. I can love and nurture your child to the best of my ability. So when you are running to the district or my principal about what I need to do please remember WHAT I have done and have an open communication with us before you talk to the “higher ups”. Prepare us for the stress that you will be placing on myself and maybe my family.

        BTW I am a parent of a special needs child also.

    2. WerdProblems

      While I believe most teachers mean well and many do worry about their students, I ~do~ blame them a little because they are the face of “the system.” If you are not part of the solution (however challenging and difficult that may be), you are part of the problem.

      Some teachers do everything they can to work within the limitations of the system and those teachers are open to collaboration with parents. Others throw around the word “team” … when what the really mean is … IEP “Team” = “Parents, smile, sign here and go away.”

      Families of children with misunderstood and under-served conditions (mine has dyslexia + ADD … where public education has UTTERLY failed to translate 35+ years of scientific knowledge & study about how to treat these issues effectively … let alone educate teachers and identify at risk students in a timely manner) cannot, as the author points out, afford to enable the failings and the blind spots of The System. And we cannot make those who are carrying out those failings COMFORTABLE while they do it. How else will things improve?

      It’s like saying … don’t blame the people who are carrying out segregation for segregation. All that is required for evil to flourish is for good people to do nothing. Truth.

      Do you imagine that we don’t MIND having to be in conflict with the people we turn our children over to for 7-8 hours a day? It’s INSANE what familes are put through … if families of general ed students had to fight as hard as we do to get even mediocre support, they would rise up with pitch forks and torches and demand that The System be turned out of the castle and burned at the stake.

      Teachers are not the enemy, but neither are parents. If parents AND teachers — those on the front lines and in the awful trenches made to live out this bad policy — rise up together to demand change, THEN there will be less conflict in the IEP process. Where there is smoke, there is FIRE. If you think that the problem = problem parents, then you are not asking the right questions about what is going on and about what needs to be done to make things better.

      1. WerdProblems

        Do parents behave badly? Of course they do. They are human like teachers are human. But Parent Behaving Badly are NOT the ROOT cause of the problem. Some of us are just better (more effective, more diplomatic) than others at dealing with TOTAL FUBAR. Trust me, dealing with this system and what it tries to do to your child takes a serious set of skills and advantages that many if not most will lack in one way or another. We are set up to fail, just like our kids. And it’s not okay. (sorry if this is duplicate, you can just delete one … I couldn’t tell if this comment submitted previously)

    3. Amelia

      Having myself been labeled a “problem parent” for attempting to get my son a talking device, and the one on one the school district had promised me, as well as having delt with several school districts in three states, I can safely say 90% of “problem parents” are labeled that simply for being a squeaky wheel. It is NOT the teachers who make the decisions, or who fail the children, or spend 15 minutes on an IEP and walk away feeling smuggly satisfied at having “knocked another one out” for the next 12 months. I have had more teachers lament and collaborate and give me advice and comfort through the IEP processes than even my closest friends have been willing to provide. Often even when a teacher AGREES WITH YOU, and advocates for your child, or plainly says your child NEEDS something, the IEP “team” makes a decision based on the path of least resistance, and the districts bottom line. It’s one thing to provide all services to all children, that would be unreasonable, chaotic, and needlessly expensive. But our children who DO need more are denied services because of the cost, and the hassle. Teachers do not make these decisions, and their “professional opinion” is very frequently glossed over, dismissed, or blatantly ignored. There are teachers who have just given up, yes, but in absolutely no way do I get the feeling that is what this author is trying to convey. I applaud her voicing what all of us “problem parents” feel when we get ready for another circular conversation, where we know we will only be taken seriously if we pull out laws and rights and make our voices and intents heard. We don’t relish this, infact we feel like it leaves our children more open to being left behind, or under served. I’ve only ever known one “bad” teacher in my entire life, and she was a teacher of mine many years ago. There are bad teachers, but most of them are good teachers who are bound and restricted until they give up fighting.

    4. Cinthia

      This is PERFECT! Do not let anyone tell you it is not! You are more thoughtful than most. I have heard people rip others apart over the wrong coffee order or a coupon at the store, this is about OUR children and giving them the best chance for the future. An advocate will always step on toes, will always push, will always insist, THAT is AN ADVOCATE! I can’t imagine any parent who would not go to bat for their child specially those of us with children who can’t defend themselves. There are a lot of reasons why people don’t readily offer solutions but the worst excuse of all is PRIDE! Some of these people complaining are simply that, pride full and arrogant, I also am a teacher but as a teacher you are also a student because you should embrace every opportunity to do what’s best for the children entrusted to you, you should be open to learning new ideas and methods and you should be on the side of education, general or special! The fact is you shouldn’t have to apologize but its beautiful that you did, one more example of the good hearted person you are. Best of luck to you and your son. Keep Fighting I know I will!

    5. Julie

      Amy,
      I am damn proud to be in your words a “problem parent” and I can promise you if I ever feel avoided by a teacher of my special needs child, I will stop at no length to get their attention and be heard, wether its going to their boss, school board, local newspaper whatever. My child has worked harder in his 5 years of life than I have in 35 of my life, and I will never let anyone bring him down or discourage him, because of their lack of patience, their selfish acts, or they feel underpaid, that is their employers fault not my childs!

    6. Frustrated SPED teache

      Amy,
      Thank you for putting this out there! As one of those Special Education teachers that are up at night worrying about my students I sometimes I feel targeted about things I cannot control. Parents need to understand also that your child is not the only one I teach all day. I cannot email, text, etc throughout the day about your child’s behavior, etc. I can love and nurture your child to the best of my ability. So when you are running to the district or my principal about what I need to do please remember WHAT I have done.

  3. Terrie Humphries

    This is well written. My son once attended a school with a very faulty system. My feelings for that school system and their se depatment are covered word for word here. However today I have my son in a district that is very good what they do. It has been so nice only to have a yearly ARD meeting. But we have been in your shoes. You are a very btilliant writter.

  4. Kaytee

    Do you encounter these sorts of issues with ALL your son’s service providers, or just the occasional one?

    If it happens once in a while, go go go momma bear. Your son definitely needs you to ensure he gets what he needs.

    If it happens pretty much all the time in every setting (at school, at private therapy, at camp, at the bounce house, etc) and YOU are the common denominator, it’d be worth considering what you’re doing to antagonize the folks who are helping with your son.

    There is definitely the odd bad egg of a teacher/therapist out there but they’re usually the minority. Having an incredibly defensive off-putting attitude (or even just being flat-out rude to support staff because you can) harms nobody but your son.

    Signed,
    Former receptionist to a neurologist who occasionally waited until the last possible second (within the hospital’s service standards, of course) to return the calls / arrange appointments for a kid with a particularly awful/pain to deal with parent

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Kaytee, I was speaking about the future — not the past or present necessarily. We are just beginning to have issues regarding Callum’s education, so this is more of an acknowledgment that it’s inevitable. It might surprise you to know that I’ve actually never had any kind of run-in with anyone who has cared for my son. It’s not my style, and I’m not a very confrontational sort of person. Getting “unpleasant” can mean a lot of things – letters, complaints, or availing oneself of the safeguards afforded to parents of special needs kids via IDEA. I am not actually endorsing cursing at someone or hassling the receptionist. And, for the record, I happen to be a teacher. So, I’m quite familiar with the ugly parents. I have no intention of becoming one of those.

    2. Shelbi

      Kaytee, Just to let you know when you “waited till the last possible second to return the calls” Do you realize that you are becoming a part of the problem in your choice to do this? Most parents of special needs children have two jobs, the one they get paid for and the other more intensive and more demanding job that they don’t. When a person waits till the last possible second to return calls they are telling that parent that they and their child are not respected, if they aren’t respected why should they respect you since you are the one treating them this way. Also when a parent calls and tries to set up an appointment they are usually also trying to let their boss know when the appointments are to get the time off. When you don’t call back at a reasonable time of day it makes it more difficult to make that appointment in trying to please both the clinic and the boss as to take the least amount of time off as possible. In this day and age when most doctors don’t work everyday of the week and at times only work at some clinics once a month this can be very frustrating. It took me 6 months one time to get an appointment scheduled because the person waited until the last possible second, ended up leaving an message for me which I returned but they had left for the day. So please see that you are part of the problem in thinking that you are the only one stressed out here. Just once put yourself in the shoes of the parent who if they are like me have to arrange 14 appointments this month and it is a slow month. This also with arranging it around my work schedule. Have a bit more patients with the parents as they work 128 hr weeks not just 40 hr a week.

      1. Kaytee

        I worked at a large pediatric teaching hospital with a highly regarded ER. The neurologist I worked for was conscientious and punctual — except when called into emergency surgery, eg injured kid lifeflighted in. I was proactive in calling patients to give them a heads-up if there were delays.

        The vast majority of parents/guardians were great — a teeny-tiny minority were not. These folks left expletive-filled messages when they arrived to
        pick up a script 2 hrs after the office closed (having been informed that if they called to let me know they’d be late, said script could have been picked up at reception), pitched a fit bc they weren’t informed the doc was African-American ahead of time or merrily encourages their little darling to hit the lab tech applying the electrodes. Every. Single. Time.

        A parent is certainly entitled to leave an expletive-filled message when they arrive to find the office closed at 6 (when they are aware the office closes at 5 daily and to let me know they’d be late so I could leave the script at 24 hr reception for them), to pitch a fit bc they weren’t informed the doctor was African-American ahead of time or simply to encourage their kid to hit the lab tech applying the electrodes. However, actions have consequences.

        Am I part of the problem? Officially? Nope, because the call was returned within the five-day service standard for non-emergency cases.

        1. Profile photo of FlappinessIsFlappinessIs Post author

          Kaytee, I’ve neither left an expletive-filled rant on a voicemail nor raised my voice. I’ve never demanded someone’s job nor ask for someone to be disciplined. In fact, I’ve never alleged a single complaint against any individual. But I will not fail to draw attention to the fact that – say my child does not receive IEP-required OT for several months without notification or offer of reimbursement – a free and appropriate education was denied to my child. And I will, if necessary, take legal action to ensure it is afforded to him. That’s not at all the same thing as being an unreasonable jackass. There are people like that all over. You can’t tie jerks to any special interest; they’ve in all of them.

          1. Robin

            Thank you for your letter. I am in the same situation. I think its crazy that everyone assumes you are the nasty parent because of your blog, or a teacher hater. I understand fully this reaction. I have been absolutely nice and polite in all my interactions with the school. But my son is being denied an IEP, even with multiple physician’s diagnosis. So we are currently taking legal action. So to everyone that assumes standing up for your child means you are rude or difficult… they obviously have not been in our shoes.

  5. Lorri

    As a retired special educator and the parent of a child with a disability, I totally feel what you feel. It is painful being a special education teacher today – On the one hand, being forced to embrace curricula and tests that do not meet the needs of kids and cause emotional meltdowns in school and at home. On the other hand, being rated ineffective as a teacher if you are caught doing the right thing for kids, and risking losing your job. Special education teachers are between a rock and a hard place. On top of this, the new teacher certification tests seem designed to “fail” student teachers, and empower corporations to decide who becomes a certified teacher. I train special education teachers in college, and I can tell you that what the “evaluators” are looking for are not best-practices in special education. I am being forced to change my college syllabi so teacher candidates can pass a test!

    As moms of students with disabilities, we are also caught in this web. Resources have been cut, IEPs aligned with Common Core standards are nonsense, services non-existent, kids hating school, etc. What can we do? Attacking the local school is not the answer. Most special education teachers would love to be empowered to do their jobs! We need to organize in a big way, statewide and nationally, and call attention to this problem. We have a federal law that protects our children’s due process rights to a free, appropriate public education, and we are coming up against lawyers hired by school systems to fight us! IDEA grew out of the civil rights movement of the 1960s. It’s time to organize and fight back, because if we don’t, special education IS going to disappear in the very near future!

    1. Karen R.

      We chose to home school for that reasons. It has been very difficult financially and your guess is as good as mine as its effectiveness, but our 16 year old is well adjusted, happy, and productive. He is not social, but that will come in time.

  6. Leslie Hickerson

    As a teacher who is also the mom of a magnificent autistic kid, especially today–the hearing papers are being served to the superintendent today after almost two years of really basic FAPE and LRE issues, many meetings, lots of everyone agreeing but no one implementing, Thank you for this. This *is* how it is. And I’m terrified–mortified– of due process, but if it is what must happen to get my son what he needs, then I’ll do due process, oh Hell Yeah. Thank you again. (weak air punch!)

    1. Catherine Cheyssial

      I’m a parent of a boy with Aspergers and am in the same situation. I am in the due process as I write this and next week is our first resolution meeting with the school district. If I wasn’t advocating for my son, there would be no one else. He only has me to advocate for him and I have signed on for the job and give it everything I have. My son has suffered in general ed for years and then was put in a special ed day class that wasn’t meeting his needs either. He ran away from school twice and the second time was not located for nine hours and was then found in downtown sleeping on the street, at age 12. I decided that enough is enough and I had to make a unilateral placement and ask the school district to pay. I enrolled him in a private school that has far less students per class and has services he needs. I’m prepared to do whatever I have to do to get him what he needs to be successful. I will fight the good fight and probably be viewed as one of “those parents” and I’m really okay with that because I know that given the same circumstances, the teachers and administrators would do the same for their child. I respect teachers, my two sisters are teachers, but I know the system is broken and the parents are left to pick up the pieces. We do what we must and it may be adversarial at times, but that’s part of the process and the officials play their parts very well at defending the system. I hope to get a good outcome next week. My prayers and good wishes are with all of you.

    2. Shelbi

      Leslie and Catherine,
      Good Luck to both of you. I was in the same boat as you. My son’s school found out his triggers than instead of helping him they used his triggers against him and provoked him every day mulitple times a day to get him to act out so they could document and send him to another school that had no experience with Autism, it was just a dumping ground. Even my lawyer was telling me to settle because the school had never lost a case. Well I know the law and they violated it multiple times and multiple laws. I did not sue them directly I filed a complaint with the state board of ed. I didn’t want money from the school district in that I didn’t want to take away precious funds from other students. Long Story short we were repeatedly mistreated by the school district and their lawyer. I should mention that I used to work for this same school district and the Special Ed Director was harassing to me while I worked there to the point that my Union told her to back off because I had a good case for retaliation. Anyway we WON, the school district was found to be in violation of FIVE Federal laws, they were fined and it was made public knowledge that they were not doing their jobs. The only things that I asked for if we won was to have training for ALL levels of teachers and Administrators on what their jobs according to the federal laws were and how to implement them and 21 hrs of tutoring since they kicked him out of school and only provided 1 hour per day of schooling as this is what the law states is the minimum. If they were really concerned about his education they would have provided more. Now he is in a different school in a different city and is doing great and making friends. Teachers please stand up for the kids, if more of you do then the administration will have to change their ways.

  7. Elizabeth

    Outstanding. Eloquently and amazingly said. The purity of your goals and intentions for your son are so well communicated. Thank you for posting this.

  8. Dana

    I read this with utter admiration. I, too, am that parent. Not one who sets out to upset people or keep people on their toes, but one who does so to make sure that my child has what he needs to thrive. The path to success is not filled with cut corners or technicalities of service provision. No. The path to success is putting forth the effort and guaranteeing he has the tools to do the best he can. My issue has also not been with teachers. They have been wonderful. The issues come about with those who make decisions about resource allocation (both financial and staff), guaranteeing accommodations, and being forthcoming with me when a challenge presents itself. My son has done remarkable things and I’m so proud. I’ll continue to pay attention and do whatever it takes to make sure this continues.

  9. Alisa

    As a parent of a special needs child, your article moves me. My son is not yet in the school system but I’ve had to advocate for him since he was born and we found out he had a stroke. I worry about the day he enters school and we approach these hurdles because no one is going to advocate for him the way that we do.

    If nothing else, your article makes me feel less alone. Thank you.

  10. Heather

    Hi my name is Heather, I am a mom of Alexis who is a special needs child, a student of special needs education and therapy, and a caregiver of special needs children. I’ve experienced first hand the lacking and the excelling of teachers and other professionals. Alexis’ kindergarten and 1st grade teachers did the bare minimum. What they required to do. Barely getting her to write her name. Her 2nd grade teacher is the only one who has made progress. She goes above and beyond. Has given me her cell number, checks on Alexis on extended leave time, and treats me and my daughter like her own family. And guess what it is the same school district so no excuses. Not only has she gotten Alexis to learn colors, shapes, numbers and letters, but Alexis’ can now read about 6-8 words!!!! She is so inspirational she has raised 2 special education teachers herself. Please don’t say ALL teachers are exceptional. Some are just there because special needs is the most lacking field in educational providers. They are guaranteed to find a job, my school books even tells students those exact words. There are great ones out there and when you find one you wish you could make them an official saint. I could not be more grateful for Peggy Elders. I will remember her FOREVER.

    But I’ve also come across other professionals who are not teachers who put up brick walls to my child’s rights thinking I don’t know any better. Pediatricians, Special Needs Board Directors, Speech Therapist, and even Special Needs Bus Drivers. All of these people deserve a letter like this from me. Between telling me my child wasn’t allowed testing, telling me kids I care for don’t listen and that its not their cognitive delay, heck her speech therapist had the nerve to tell me that “something isn’t right in your kids head.” Nothing is “wrong” with my child. What is wrong is her approach to it.

    IDEA was made because in that time frame people were mistreated because of their disabilities. It is still an active law because they are still mistreated because of their disabilities. Not as much as back then but it still happens. The only way it is constantly enforced is if parents know that this law and rights do exist. Teachers should be proud that there are parents out there that care about their children enough to advocate for them. Trust me I know there are parents out there that don’t.

    It is my job as her mother to protect and give her a voice. This calls for enforcing IDEA whenever it is not being utilized. If this makes me a “problem parent” then so be it, but the problem is I HAVE to be that parent.

    And thank you for this letter. It’s exactly how I have felt time and time again. It’s always nice to know when there is a teacher out the that knows how we feel.

  11. Heather

    Oh and just for the record her father is incredibly impressed with how calm and relaxed I am when going up against some of the people. Typically those who act like said don’t expect a quiet and calm mother that they are refusing to help to pull the 50 some odd page IDEA booklet out of her purse and set it on the table with tabs and highlighting. If at some point of the meeting I feel the urge to yell I hand them a phone number of a lawyer. I tell them to call the number because I can no longer speak to them rationally. I’ve never had to go to court and my lawyer has never contacted me.

  12. Carrollynn Henshaw

    I am a teacher and a special needs parent.

    This post is incredible. It is brilliant.

    Thank you.

  13. Suzie

    I dont care who this bothers, let me explain what I have found incredibly profound.
    My son now almost 21 was in a small district, that meant anything he needed help with at school for his disability was paid for by state insurance, IE Speech therapy, therapists that would go in and observe him Ect, we moved from a larger district that allowed the therapists in the class rooms, when the therapists attempted to obtain permission to sit in on a class or 2 a week to AID my son the district denied it, when My son was being Bullied and My other 2 boys stuck up for him they were punished by the school, That is when I became extremely proactive, I was in school at least 3 times a week, the schools responce “we cant do anything unless we see it,” at which point mine was take care of the problems or will will take care of your job, or another time was I will contact an attorney, but none of that scared them, then eventually I became that parent that the schools do not like dealing with and with that came the threat of severe bodily harm as one of the Bullies was now an employee of the district, that they listened to and we had no more issues with kids or teachers.

    1. Heather

      “we cant do anything unless we see it,”

      This phrase seems to be well used with bullying. I myself have heard it and responded with “well then perhaps you are not observing them as much as you say you are”. Then threatened to come do their job for them or give my child the go ahead to defend herself. Lexi has not been bullied since.

  14. Mikka

    Wow! The best written letter ever…I live it every day. Just so happens I met another administrator today who told me im a great mom. I agreed as long as she is good to my son and does the right thing or…I’ll be her worst nightmare. This is my purpose and I take my job seriously:)

  15. Jessica H Roberts

    Loved it! Very well written! You hit the nail on the head! Thank you for having a voice for the ones that do all of the above! That care! No one understand what a special needs parent goes through – Not the half of it !

  16. Leo Zanchettin

    Well said–well said indeed! Unlike you, however, I have had to be “that parent” with both teachers and administrators. As you said, not all teachers are this way. But it only takes one to sour a child’s view of school. Especially if that teacher is a special education teacher who is convinced that the only thing wrong with your child is that she’s lazy. Despite the diagnoses. Despite the melt downs. Despite the anxiety and distractibility. We have had both gen ed and special ed teachers say that about our two oldest, and it has been the most difficult thing to overcome at an IEP meeting.

    I notice that you are just beginning your journey with the school system–if you are even sending Callum to a public school. Teachers in the early grades tend to be much more sensitive and in touch with their students’ personalities, learning profiles, and strengths and weaknesses. It’s the later years–from fourth grade on up–that have caused us the most challenges. Especially middle school. It got so bad, in fact, that we withdrew our kids and enrolled them in a private, aspergers-only school. What a difference it made!

    Again, not all teachers are like this. Some have been very understanding. Some have gone out of their way to understand the challenges our kids face. Many have listened respectfully to our explanations and our stories. But not all. Not by a longshot.

  17. Nancy

    I have a friend who had to give up custody of her child in order to get him services. And the system continues to fail him. He’s being moved, yet again. They do not know how to help him. And now my friend has very little input. Some “professionals” can’t even pronounce her name and have never seen her son. Yet they have more input than she does. Your letter could have been written by her to the people she has had to deal with in trying to get him help. I applaud your post and your writing style. One writer to another.

  18. Jo-Anne

    Utterly perfect ! You write so beautifully and your words have floated around in my head so many times , I’m amazed to see them all in one place ! Thank you so so much xx

  19. Pamela

    Thanks for writing this. You put into words what parents with special needs kids have to deal with almost daily. I had a teacher tell us outside of the 504 meeting that he did not think limiting a testing practice for our daughter was helping her in any way. It was just giving her an easier metric and not challenging her.. I took that to her counselor and they changed it. She is doing better in Math now. But he was afraid to bring it up in the meeting because it was a standard practice for kids with her issues. That is my biggest issue with the schools and counselors and doctors. the ones who are not afraid to try out of the box ideas that teach or work the way her brain works.

    I have been very lucky to have had a friend go through a lot of these issues with her oldest and she gave me such great advice and things to avoid. Definitely having a tutor, mentor advocate is a blessing.

  20. Deborah C

    When my son, now 27 was much younger, I had incidences where I really could have used this type of letter and because the Internet wasn’t in my home (or around) in my area and because lovely people such as yourself hadn’t thought of this note yet, I did my own advocacy and yes, I upset a lot of teachers, principals and special ed. administrative staff not to mention doctors, psychologists, psychiatrists and school counselors. WHY? I wasn’t the textbook “good” parent that just took things at face value. If my son was supposed to get services agreed on in our IEP’s then he’d better be getting them or they’d have to face Momzilla (aka ME). I didn’t used to be Momzilla, actually, having been a teacher myself I understood what it took to teach a class of 35 rambunctious kids, so I understood the short time I had between delivering my lessons while higher ups sneak into my classes to watch me (nerve racking), parents too, kids that didn’t want to be there and would make trouble for me, a full curriculum and everything it took to run the class. My heart goes out to teachers, because I was one. I know teachers turn parents know full well what it takes so yes, sometimes we become a momzilla when the need calls for it.

  21. maricela

    I applaud u. I used to work with special needs children. I believe u r child or any special need child have the ability to have what they need. How Ever Politics Always Wins No Matter What Is needed. I hated to leave my job but working with pretending teacher’s that cared was too much. They even called me lazy for not working. I believe I out of say 10 aides would work while the others pretended to work. I was a hard worker who stood up. I have tried to get other jobs with special needs and have been blocked from the schools where I live because I saw and heard touch. So I am very proud of you for not being shamed..

  22. Vincent Tippens

    I thank anybody who calmly takes this stance.

    I *am* the disabled kid. I am now 21, and have been away from the mandatory schooling system for just under three years, but the problems faced in the school system due to apathetic, cruel, or even simply uneducated people being involved in my case are still following me around.

    In the 5th grade, I was bullied relentlessly, by both students and ny homeroom teacher. After complaining to the school numerous times with no results, I had an emotional meltdown and verbally lashed out at the bully classmates. Naturally, when their parents complained, I was pulled out of class by the Vice Principal and interrogated with the intent to cause me to lie about my situation and actions, resulting in a trip to a psychiatric hospital at which I was diagnosed as having Asperger’s Syndrome. Attempts to make the school behave in a civilized manner were unsuccessful, and I was placed in a private school (as legal action was the only possible other option).

    There have been other problems, but that was the most relevant to the post here. Sometimes the entire chain of command over a child is corrupt or stupid, and nothing can solve the problem. I feel these scenarios may be prevented by more Special Needs parents being as active as you and my own mother. Eventually someone will take notice.

    Until then, have your lawyer’s number ready and your legal notes at hand.

  23. Pat

    I am a teacher too. Or I was before I got fired from the last 2 districts I worked for because I stand up and say what I think or I tell the parents what they need to do to get it. So I’m not there anymore but I still watch. I have a child myself and I could have written your blog. I have told so many parents – any MYSELF the same things you said in this blog. It really doesn’t matter in the end. You are doing what must be done because you are right, no one else will do it and it is YOUR SON. YOUR BABY! And he is worth it. Keep it up. I now work with kids outside of the school system and it doesn’t pay as well, is much harder work, and is much longer and inconvenient hours (I may have to meet someone at 7 am and then work until 7 pm with a child who is not available until after school and tutoring or whatever else they do after school.

    In the end, your child’s future depends on how much you are willing to just take and fight through to get your child what is needed. Keep it up.

  24. Valerie

    Couldn’t said this better myself. I know what you mean and I know where you’re coming from. I’ve positive experiences and negative ones dealing with the schools and the general public. We now travel with my husband and have had different experiences in different places. I now homeschool, so I know how difficult and challenging it can be working with one child much less a whole classroom full. But as a mother of a special needs child (I have three grown children) we have a tendency to be that more watchful. I am never rude if I can help it and try to educate those around me, but I am also ready to pounce if the need arises. So, yes, I understand this letter…for the future.

  25. Lisa

    One of the biggest obstacles I have to face with my two autistic children are:

    Medical will pay for 5-10 hrs of week of ABA ($40 an hr), then more for after school therapy, but public schools fight for their own untrained aides who don’t know our children’s programs in the home. How can they generalize information at school if they don’t know in home programs?? They can’t. I’ve seen it. And these programs change constantly.
    People may wonder why not use their aides ? It’s free for the parent! Because they are untrained in dealing with behaviors. How much to prompt, how little, when to prompt, and how to take behavioral data. How and when to involve children and when not to.
    Thank you for the article!

  26. Erin

    I love this. I will share it. I live it every day. With your permission, I may just use it some day. Thank you for putting our lives in words so concisely.

  27. Jenny

    Amen!!!! I’ve been there and done that too!!! It was a well written article as well. Thanks for writing it. :0)

  28. Shannon

    Go get ’em! I know your sentiment all too well! The teachers aren’t the problem, but unfortunately when it comes to making changes / adding services, their hands are tied! It’s those damn, bean-counting administrators! Don’t let them wear you down! You got this!

  29. Sherry Williamson

    ok lets try this again….this is second time to try and post a comment. The first one was deleted some how. It was deleted right when i typed PRAYER and GOD in saying that this is whats truly helped me through all the stressful chaotic times. Satan trying to steal my peace i guess and it didnt work. Thank you, JESUS!!!! I have two boys with autism….Kaden, 14 yrs old, is severe with severe sensory issues, non-verbal, still in pull-ups, sick alot (he has MRI on February 24, 2014 due to a grand-mal seizure in July 2013. he has two knots on back of head behind each ear one is hard-like and the other is fluid-filled like/soft. he will not let anyone touch or near his head period/ever.) Kyler, 10 yrs old, higher functioning, just started talking about a year ago….started one word sentences to 2 and 3 word sentences and now short sentences at his will and sometimes in an appropriate manner, echolaliac, ( before he was verbal he would sing non-stop daily until he would finally fall asleep in the wee hours of morning. he knows about 50/60 songs and every word to them and would sing VERBALLY!!!!!) He has pica (so sad to watch him crave what he cannot eat). He started with meltdowns a year ago and this affects him almost daily a few times a day. They are my life and always will be. They deserve to have their needs met righteously to better their lives. I am their advocate and will fight for them. They are huge blessings in my life and am forever thankful for them!!!!!! I would like to thank you for sharing the APOLOGY letter. Such inspirational words that i admired and they touched me in so many ways. it was written tactfully and in a respectful manner that said to me…you say what you mean AND mean what you say with emotion and feelings that also tells me you have a big heart. You want the best for your son and you should. You are a blessing in his life as he is in yours. People who dont have to be responsible for special needs children dont truly understand all that we go thru everyday both physically, mentally and emotionally. Its so exhausting and it hurts. Anyway, no matter the situation you know your son best and know his needs and all the above. Stand up for whats right and for what you believe in. We need more people like you in the world who’s not afraid to put their thoughts into words and let them be heard and proud to say it. So much love your son and its just beautiful. Never give up….GOD bless you and many many hugs to you and your amazing son!!!!! Once again, thanx.

  30. lin

    Thank you so much for the eloquence in which you stated what I have said to many a school board member :-) my son’s teachers for the most part have been good ones, there have been bad apples in the bunch, but we have dealt with that. The “staff” meetings for IEP and school placements, can go either way depending on which rep you get and what the budget for the year is. I applaud another parent willing to be the locomotive that gets her child to the right station on time!

  31. Amanda

    I have a child with autism in kindergarten and I was so disappointed when his report card recently came with no comments at all. How can that be? I get no communication at all from the school except for the IEP meeting. I thought they would keep me more in the loop.
    However, the whole education system seems to be lacking. In my child’s older siblings I have seen that the Missouri schools only teach to the MAP tests and they just seem to learn so little–just enough to get by. There is never any homework, never any great works of classic literature assigned. In sixth grade, we read books like “Where The Red Fern Grows,” “To Kill a Mockingbird,” “The Hobbit,” etc. We had earth worm projects in science, and studied things like ancient Greece for a month. Where has the richness in education gone? It seems so chintzy and watered down today. Special Needs or not, clearly parents have to do a lot of supplemental education these days.

  32. Natalee

    This puts the IEP experience into great perspective! It is beautifully written. Thank you for helping me get through this day. (A parent of two boys with ASD,)

  33. Tabetha Kelsey

    My apologies if this comment posted twice..the page timed out while I was posting the first time, so re-posted.

    There shouldn’t be a single negative comment in regards to this blog post. Anyone that has a child in the in any kind of special needs “system” has had every one of these thoughts racing around in their head at some point or another. This is written perfectly, eloquently, yet still maintaining objectivity.

    Blessed Be. <3

  34. Mary

    If you are not criticizing teachers here, then who are you speaking about? Therapists, supervisors, administration? If the majority of people you have encountered in your child’s educational experience are as you describe, that is really sad.

    1. Cinthia

      Mary, I felt (being a mother of a child with ASD) what is being criticized here is the system, which is not set up for advances in both the education and therapies available now. The system is not set up for the changes in insurance policies, and even technology available. So we are working within OLD standards and guidelines which are just NOT GOOD enough. We (parent advocates) are swimming against the current of complacency, politics, and lack of resources but we will do it every day all day for a chance to help our kids. Every parent no matter your child’s abilities should feel the need to find something better for their child.

  35. Keegansluis

    Hello this is Keegan again commenting on behalf of the Sluis Academy. Your post could not be more truthful and honestly I could not agree more. People take things far to seriously and need to realize that it is nothing personal its just the wrong place at the wrong time. Sometimes life isnt fair and it affects your everyday life thus you may come across rude or ignorant but realistically they dont know you or the difficulties you face everyday! keep up the good work. your honesty is appreciated.

  36. Gina B

    You have put into words what I didn’t even know I felt for a long time! Thank you for having the courage to write a post about what motivates the frustration and the fight of parents like us who raise these beautiful kiddos that need so much!

  37. ace

    I commend you for writing this letter. It certainly has expressed all of our feelings for our son whom has a disability. It is the red tape and political games that impedes and challenges the success of our children. Unfortunately, at the end of the day WE are our child’s voice. Thank you again!!!

  38. Suzanne

    As the elderly mother of a middle aged son with a severe mental illness, a son who is in jail on Micky Mouse charges because there is nowhere else for him (the psychiatric hospitals having been systematically,deliberately, and relentlessly closed over the past 30 years), let me tell you that your campaign needs to go far beyond the schools that fail special needs kids. Our whole society needs a severe shake-up to begin to recognize the lives that are thrown away, as if they didn’t matter, by poorly designed school systems, by inadequate health care systems, by criminal justice systems that have little to do with justice, by the general populace that doesn’t give a big enough damn until the special need directly hits at home. Sorry for venting; it’s been pent up a long time. Blessings on the efforts of all parents –and occasional others–who try to improve the education, health care, and justice systems.

    1. Margaret Burgess

      All l it takes for evil to succeed is for good men to do nothing. My school district violated my kids IEP & lied about what they were doing in the classroom for supports. When I found out I was livid. A teacher can read the IEP & know they haven’t been trained for that. Who is responsible?

  39. lisa

    Oh I’m just about to send this to my friend Sarah who has been going through hell doing exactly this for her little boy. You could connect with her at Christian’s Gift on fb, thanks for putting into words so many of my own feelings as always.
    sending love lisa x

  40. Me

    I’m a teacher and a parent in the district I work for. I’m that parent. I have been that parent for eight years. It took me that long to get my child services. As a teacher, I don’t take it personal, and I work with parents and “hear” their concerns. As such, I’ve not had problems. As a parent, I’ve had many problems at all levels. I love this letter. It’s perfect and it’s not anti-teacher. It’s pro our children who have no voice.

  41. Jayne

    Yet another amazing & true to life piece! This is fantastic & I am seriously contemplating printing off & laminating so I can just pull it out of my bag, jot their name, let them read it then wipe & re-use at the next venue! 😀 x

    I find this in education & medical – I have taken the brunt of a few hostile tones! Hey, if it makes them feel better, great! I’ve found that hostility & attack is usually their defence and I normally ask them to re address the matter & answer my initial query!

    (Then come off the phone/away from the meeting & weep!) – it is often so draining!

    I do not find your piece offensive at all & I am surprised to see some have! But then, you didn’t write this to ‘tattle’ or ‘rant’ or even receive the Nobel prize – you wrote a blog – a very good one at that! I look forward to your next!

  42. Ellen Kolb

    Thank you. I wish I’d read (or written!) something like this ten years ago. My children are now grown. My youngest is “borderline Asperger’s,” according to the pros who evaluated him. I tried for years to work with the parochial schools where my other kids did well. I fought for my youngest son too long in that particular system, thinking if only I were a good enough advocate, he’d get the support he needed. I know I rubbed some teachers and staff the wrong way – but it was nothing personal!

    We finally transferred him to public school in tenth grade, where he got the team he needed (and so did I).

  43. Magda

    This blog came at just the right time for me. This is exactly how I feel about my child’s school. Just over 10 days ago my autistic, non-verbal son was getting off the school bus, and while I understand that accidents happen, he wasn’t watched properly-he has depth-perception issues, and he missed 2 steps, fell and broke his hip! He is still hospitalized, and to say we are traumatized by what has happened, is an understatement. The school, trying to encourage his independence they told me, allowed him to just come down without anyone there watching him. Oh, they said the teacher’s aide was right behind him! but how can you prevent someone falling if you are behind not in front?? He had to endure hip pinning and this will be a long road to recovery, if he regains all the skills he lost as a result, as it was difficult for him to manoeuver uneven terrain or steps to begin with.

  44. Kate Griffin

    I was going to write my own, but this is so perfect! I hope you don’t mind if I use it. I will give you proper credit.
    I am going to speak before the school board tomorrow, and I plan to send this letter into school before hand so they know “it’s not personal.”
    Our state Department of Ed just ruled that in the first 62 days of school, my non-verbal child who has Down Syndrome, did not receive services for 40 of them.
    We have to stand up for our children- we can’t worry about hurting people’s feelings.

  45. Julie Dinkins-Borkowski

    So perfect. I was that parent, and now I am being retaliated against for advocating for my daughter. It is pure hell. I am pulling her out of school and waving the white flag. Call off the henchmen. I surrender.

    The laws are not there to protect the child or the family. They protect the district.

    I did all the right things and followed all the safeguards, only to end up a couple thousand dollars in debt and to have my daughter treated worse than ever. It is hopeless. I would not advise any parent to pursue their legal rights because it only makes things worse.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I wouldn’t advise them not to fight for their child’s rights, but I would warn them to count the cost. Know that it is stressful. Know that keeping a cool head is always in your best interests. Never threaten a lawyer unless you intend to go the distance. But yeah…this is hard.

      1. Julie Dinkins-Borkowski

        There were no lawyer threats. We researched our rights, and carefully planned and researched the right advocate to help us. We went the distance, and thought we did all the right things. In the end it did not matter because they said they were going to fix it, and nothing changed. The school learned how to hide things better, and labeled us as the enemy even though we were not the ones who committed the wrong-doings. It did not matter.

    2. Jane

      My daughter has been thru so much trauma from her school. She has endure being isolated in a damp moldy basement of a 100 yr old school,being verbally abused by her teacher,physically assaulted by other students,and denied FAPE by being given only 5hrs of education a wk. for the entire school year. I tried every avenue to advocate for her,IEP that were not implemented,Due process hearing with ODE,Complaint to U.S. Dept. of Ed. office of civil liberty’s all while nothing changed for my daughter. I realized if my daughter was going to have any chance of success I had to get her out of that school. She just finished a very successful school year at a public school, full inclusion, and is so happy at being treated “Normal”. I wish I wouldn’t have wasted two years trying to make the school follow Federal Law,and instead just found the school that was willing to provide FAPE. The superintendent who shunned my daughter did not have her contract renewed ,so I guess she took the fall for the civil liberty’s findings.

  46. Jb

    This post was sent to me by a friend after I Wrote A Letter. In fact, it is a teacher, and a speech pathologist, who are making my child’s life worse. But the shit storm made me wonder – is it normal to have a 5 year old who hates school and thinks she is dumb? Ah, no. Not normal and not ok. Day 2 and said storm is starting to settle but reading this made me feel so much better. It isn’t personal. I am going to get in every face I need to and figure out what the problem is. And this will be my mantra – it’s not person, its my child. Maybe we need to make buttons that say That Parent. I’d be proud to wear one.

  47. Ginny

    Thank you for this and all of your posts. This is the third one that has moved me to tears. Navigating this system is challenging, isolating, and tumultuous. I’m still new at it. Thank you for your words that help me feel less alone.

  48. Sylvia Lowery

    Can I say that I want flexibilty for my near 16 year old daughter to have access to college. The teacher is open to it. It’s the College managers who are refusing to be flexible. I don’t think this post is being down on teachers. If as a teacher you feel defensive I have to wonder why.

  49. Julie

    I think you have just summed up my last two years. The HELL has ended, but now I am the Mom who filed a due process complaint and OCR complaint in the same school year. I am THAT parent, and THIS is my job.

    ” If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.”

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