In Defense of Blogging

My life is pretty ironic. Usually I find it amusing, but today it took a bit of a hurtful tone.

You see, a recent post I wrote about our issues with transportation wasn’t exactly well-received. As far as I can tell, it’s been passed around and shared with a number of the faculty at Charlie’s school and even resulted in a phone call from the principal. Yes, you read that right, I was called to the principal’s office because of my blog.

The meeting with the principal was fine. It was good, really. She was kind and understanding and the situation with Charlie was worked out within minutes.

Really, it was simple.

What isn’t simple is how to handle getting “called out.” I try really hard to keep this blog about me and my family. I learned the hard way that not everyone wants to have their life dissected on the Internet. It’s a choice that I’ve made and I try my hardest to honor the other people in my life by using pseudonyms and vague references to respect their privacy. I do my best, but sometimes my life and my feelings are going to overlap with someone else’s.

So today I received a comment from someone who declined to give their real name or e-mail address. Someone who felt the need to explain to me how I was the problem. How I needed to be satisfied with the situation and how I couldn’t expect special treatment because “what they do for one, they’ll have to do for all.”

There was a point in my blogging career where a comment like that would have flattened me–would have left me crying for days. But those were the days before Charlie.  Charlie has changed me. I have stood up to doctors suggesting we pull the plug early and let him go. I have ignored those who couldn’t see his potential. I’ve dismissed residents who were too busy to read the chart.

I stand behind my words. It sucks to have to fight for things. It sucks when things don’t go smoothly and you waste time in meetings trying to figure out the right way to get things done. It sucks when your options are limited and none of the choices are ideal. And if I didn’t acknowledge these facts than this blog wouldn’t be worth visiting.  I should just close up shop and learn how to knit or something because my writing wouldn’t ring true if I ignored the struggles that come with parenting a special needs child.

So, I’ve ruffled my community. I’m OK with that. It comes with the territory. You put your writing on the Internet and some people are going to see things that aren’t there. Some people are going to hate you for speaking your truth. Sadly, a blog post that isn’t read by that many people helped me get what I needed for Charlie. We’ll be re-writing his IEP to remove thirty minutes each day and I’ll be able to pick him up at that time and leave. Like I said, simple. While I was busy figuring out the best way to approach the situation, other people were busy judging my process and rushing to conclusions. That saddens me. That upsets me.

Kid watching TV

He adjusts those headphones so he can hear the TV AND eavesdrop

But I’m going to keep on keepin’ on. I think this blog has value. I love the people who comment here regularly and contribute their wisdom and experience. I am grateful to all of you. It’s hard to be criticized, but I will keep writing what I feel and what we experience because I believe that somebody else will benefit from it one day (call me delusional). Nobody said blogging was easy, but for me, my position is clear–I fight for my child, I share our experiences. If that makes some people unhappy, I’ll have to learn to live with that.

**I want to be clear here, so let me say that I do NOT think the commenter works at Charlie’s school. Rather, I get the impression that they have heard about this story through local gossip.  Mostly because they know some details, but not all.**

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Comments

  1. Unfortunately, the cowardly person who left those comments were probably talking more about themselves than you. The fact that they couldn’t leave thier name attests to that.

    As for people getting their feathers ruffled because of a snapshot of real life with a child with special needs…umm, get over yourselves. Gone are the days when people with special needs are put away so as not to offend those living in a dream world. They are here, they may need accomidations – which are different from being self centered and demanding.

    Sorry you have to deal with folks who can’t move on if they don’t like what they see on here.

    Keep up the great work – you are one of my favorites!!! :)

    Steph and Christopher

  2. I am glad to hear you got your IEP and that you can pick up your son from school. I think it is great that you blog about things because it will only benifite Charlie and your family to have more resources and support. Good luck and keep blogging. Also it is interesting to read from an educators standpoint (unfortunitly I work in a urban district where parents like you are few and far between but I always support them).

  3. Katy, I’m so sorry you have had to deal with all of this crap on top of the day-to-day challenges that you described in your original post. If the principal does it for one, then it must be done for all? Perhaps for all who have issues with overheating–hardly the entire school population. What a load!

    So the rear parking lot is ok for teachers but if parents park there, then something could happen and they could sue? Why could teachers not sue if there is such a threat of “something” happening?

    Bottom line, I thank you from the bottom of my heart for having this blog, because there are a lot of us out here with SN kids who don’t have blogs, and you provide a forum and a refuge of understanding. Stay strong.

  4. Well done Katy, that person most probably is just green with jealousy that they can’t do for their child what you do for Charlie. Take no notice of them, you are wonderful and courageous and there are some of us who love your blog and what you do for Charlie and inspire us to do the same for our children (SN and typical) and You are NOT delusional. Hugs Sandi and Annabelle

  5. Katy,
    I love your blog. You are such a wonderful advocate for Charlie (did I mention that he is absolutely adorable?!!!). Shame on people who don’t have the courage behind their convictions and who can’t understand that you are merely expressing the need (on your own blog, for goodness’ sake) for Charlie to have his health needs met. Don’t let one anonymous person upset you — hey, you resolved the issue fairly easily. Maybe this was actually a blessing in disguise. The school might think twice now — think what’s best for Charlie and the other children (SN or typical), rather than what’s easiest or most convenient for them. I teach at a school (and have a child with cerebral palsy), so I have sat on both sides of the table at IEP meetings. I do know that the majority of educators DO want to do what’s best for the children, but sometimes they truly need some more information and sometimes even a fire lit beneath them to do what should be done. Good job lighting that fire — even if it was unintentional!!

    Keep blogging! You are an inspiration …

    Tara

  6. An excellent post. Both the transportation post & this post (really of them are!) The fact that someone has to hide behind a fake name/email shows just how cowardly they are. And if a place is more concerned about parents sueing over what might happen in a parking lot over a valid health concern, well, they might just have to fasten their seatbelts. Your not the first parent to have to address the problem & you won’t be the last. As a side note- this is your blog about your sp kid & all that goes with it. What would have been said if it was a “letter to the Editor” in the local paper? Geesh! Keep on posting. I will fully admit I wait for every post you create!

  7. I loved your post about the bus, carpool line saga. If we sent Caleigh to school this would be one of my top concerns as well. She overheats so easily. I’m sure you have learned to take each comment with a grain of salt. The internet is full of people and opinions and like those above me have said; they were probably just thinking about themselves.

    Caleigh’s would-be-preschool found out about my blog too. At first they were super excited about how “great” we were with Caleigh, but when the ARD/IEP process turned ugly they weren’t so happy anymore. They actually went back and deleted comments and made their profiles private. Like I can’t still find them :-)

    Wishing you years and years of special education blogging!

  8. “I’m not asking for special treatment so I don’t have to wait in the carpool line. I’m asking for special treatment because my child needs it.”

    I think that line of your original post says it all. “What they do for one, they have to do for all” is completely untrue when it comes to special education. It’s not special treatment when FEDERAL LAW says that a student’s Individual Education Plan must be followed.

    It’s actually what I tell my 7-year-old students. Fair treatment doesn’t mean “the same treatment.” Fair means that I am going to give each student what that student needs. And for every student- special education or not- that is different. Some need more patience, some need more motivation, some need enrichment, some need extra time to answer a question… so parents should be glad that “what they do for one, they have to do for all” is not the way public schools run, because it is what allows us to give your student a more personalized education.

    I also think that if the line causes ANY students to have to wait for 45 minutes before getting picked up, the school needs a new system. Some parents at my school get mad if they have to wait 5 minutes to leave. If people are mad about the system, the way to deal with it is not to get mad at you. Maybe this person can come up with an alternative plan to suggest to the principal that actually SOLVES the problem, and doesn’t just point fingers. I think that would be more likely to make the situation better!

  9. Parenting a special needs child (or any child really) is no picnic, and I think it’s great that you talk about the challenges that face all of us. You know, typical parents do this all the time of their blogs, too, probably even more so. It’s just that we SN parents have different needs and challenges, and it’s great that maybe other people get a look at what it’s like to walk in our shoes sometimes. We have to get creative in problem solving all the time. I think this is a cool way to problem solve!

    • I agree, Jenny. I love being able to ask a group of people in the same boat how they’re solving similar problems.

  10. Right there with ya! Blogging aint easy, I think specially for a SN parent cuz a big part of our daily problems involve other people (yeah! those who usually generate the problem in the first place :D). But I’ve also continued blogging… I don’t want to contribute to make a society where we can not ear another persons point of view!!!

    I’ve found myself in many problems because of my blog (like we’ve been BANNED from the hospital where we used to go because they didn’t like me blogging about how I dont like it when my child is in the hospital!! Gee… I mean, REALLY? Do they think it’s entertainment? ) Anyway… I’m also aware that there is a lot of people who benefits from our blogs and that is more important. I rather speak for those who want to communicate, who need information and support, than shut up for those who just don’t care.

    So I say ‘bring it on’. You are an amazing mom and blogger, and have tons to say! :)

  11. Katy,

    I always say that if you can’t put your name on something, then you shouldn’t say it. Life is not fair, period. Is it fair that Charlie has special needs? Is it fair that he overheats easily? It blows my mind that someone would be so cowardly that they would accuse you of using Charlie to get special treatment. I am so sorry that you have to deal with that sort of small-minded lack of understanding.

    On a positive note, I am glad that you got the issue resolved. I do think that there is an even bigger issue with a carpool lane where students have to wait 45 minutes to be picked up from school, and really, that 30 minutes earlier pick up is time that Charlie will likely need in the future.

    I think that your blogging definitely serves a larger purpose. I find great insight in your words and I think that those of us who read what you write can learn a great deal from you. This is your blog and you have a right to post and write about whatever you wish.

    Lois

    • Our principal really doesn’t like that our carpool line is the way it is and has spoken to people about it. I think the issue is that our school is “high demand” and many of the parents are bringing their kids in from outside the official school boundaries.

      • That’s good to hear, that it’s not just an accepted norm. There is a charter school in our district with a similar problem. I think that they keep the kids inside and radio for them to come out when the parents arrive. What a mess! Hopefully they can address it.

        Lois

  12. katy,
    as i was thinking about the criticism that came from the one who would not be named, i became critical of THEM, as have many here. i’m thinking HOW DARE THEY! “let them walk a mile in katy’s (cute) flip flops…” when it occurred to me that if i knew who “they” were, i might look at their shoes and know more about what has driven their need to judge and blame?
    so then i thought, ok. i’ll make up something and walk their anonymous mile. then, at least, i’d be a mile away from them AND i’d have their shoes leaving them bare to figure out an easier way to get where they are trying to go on the rocky road of criticism.
    ev

  13. Jailen's Mom :) says:

    I just have to say that you ARE blogging about YOUR lives & feelings & struggles & accomplishments. We LOVE that! I’d be honored if you actually mentioned Jailen’s name from time to time. Keep telling your story. Nothing I’ve read has been a lie or fabricated, so if someone doesn’t like the post then maybe THEY should’ve handled the situation differently. If people have something to hide then maybe they should step back & rethink their position. Keep up the good work, Katy. I personally love reading your blog & look forward to it.

  14. What is so wrong with wanting a HEALTHY option for your son? I despise cowardly commenters who go unnamed. If you can’t stand alongside your words, maybe they shouldn’t be said.

    You are a great mother and champion for Charlie. Keep it up.

  15. I work in preschool special ed. (Not in your school-even your or state)

    I find that I am usually the one fighting for students-while others say nothing.
    I speak out-and I am sad to say I am in the minority.
    I increase sped time without being asked (gasp!)
    -they say nothing because that means more work for them or they are “afraid” of retaliation.
    I give out my cell phone #. They think I’m crazy.
    I go to work for my students-they go to work because they have to.

    Keep on putting the word out there!
    WE need more parents to advocate for their child.

    Lisa

    (P.S) While I feel you found a good solution to your problem-I think you should have pushed the issue to park in the back. Seriously. Your child should not have to miss ANY part of the day-including the end of the day routine-just because they “don’t want” you parking in the back. Fight-you will win. Go over the principals head. Your child deserves every single minute of the school day. And if you threaten to file a state complaint-they will suddenly be your best friend. Parents don’t always want to “cause problems” but in reality-many teachers would like you to speak up when they can’t.
    Adjusting an IEP to shorten the day because of a PARKING issue directly related to health?-denial of FAPE. Free and appropriate Education.

    • Lisa, this was my first choice. There are other options, but this is the one I selected. In the future I won’t be able to alter his IEP (Federal Law will prohibit that once he’s five) and then he will get plenty of time with the afternoon routine.

      • Katy,

        I was wondering about that, thanks for answering. It’s good to hear that it was your choice and not the only option you were offered.

        Lois

  16. I am so angry, bitter, and appalled that you are having to deal w/ this. And that people aren’t willing to make the simplest of accommodations. Charlie deserves the same treatment and time at school as any of the other kids—and his disabilities shouldn’t inhibit/prohibit that. I am glad you pushed the issue, even happier that you blogged about it, and that you’ve since met with the school. Don’t let the anonymous commenters get to you. We all have to deal with them and they will always be around. KEEP writing, KEEP blogging, KEEP using your voice. Charlie will be better for it, and so will you.

    You are my idol!

    erin @ the mother load
    @erinylnn76
    http://abbyandizzysmom.blogspot.com

  17. Man, I’d be hosed if I couldn’t use my blog to write about my experiences with life and a special needs kid.

    All I can think is good on you for advocating for what is best for your son, and using *every* tool at your disposal, including your blog.

    Personally, because of my son’s special needs, we’ve turned the school system upside down. 12 different bus routes needed to be altered due to Jumby’s attendance and medical needs and they completely adjusted how they do school pickup and drop offs to accommodate his needs. And not a whisper was heard about it. But if there were problems, you know I’d be the first person to blog about it. Loudly.

    Good on you and keep up the good work.

  18. You are my hero. When you start getting trolls, meanies, hate mail, you know you are doing something right. It means you are relevant and have a strong voice. The world needs more of you.

  19. Katy,

    You own your words and I have much respect for you. You are the real deal, and in this day and age, it is so refreshing. Keep up the great writing and know that we all stand behind you. You made perfect sense. If people want to be so bothered by something, they need to ask you the questions and not just make assumptions, because we all know the old saying about what happens when you make an assumption, right? 😉

    Hugs,
    Becca

  20. Ditto what others have said about those comments reflecting more about the commenter’s own life than yours. I mean… look at the nutjobs who leave comments on NOLA.com or any major news site. The kind of people who leave mean, hateful, anonymous comments generally have pretty miserable lives themselves and just need to take it out on anyone, anyway they can.

    I don’t even have kids, so I can’t possibly imagine all you have to deal with, but I have a lot of respect for the way you’ve handled yourself with all that’s been thrown your way. I’m sure Charlie must realize how lucky he is to have a mom who fights so hard to get what’s best for him.

  21. i understand katy, i really do. my blog is mostly fun and fluff and that’s by design. but things turned on me last january when i was fighting for my life at M.D.Anderson and my oldest son who is in med. school was in a fatal snowboarding accident. the young man died who ran into him broadside and my son lost half his leg. meanwhile i couldn’t be with him because of my condition. my fun and lighthearted blog changed. i lost many ‘followers’. they didn’t like the reality of my situation. i was a mother who couldn’t be with her son. it was my very own hell.
    after that, i was in a constant fight with the med school because they couldn’t ‘accommodate’ his needs. a lawsuit followed. katy, it was awful (all the while i’m in houston, stuck in a hospital bed.)
    don’t get me wrong, my family and friends and loyal readers stood by my side during the worst
    time of my entire life. and those readers who were turned off by my horrific turn of events…
    life is tough, wear a helmet.
    xo

  22. Knitting is not so bad, really (I am a knitter). Seriously though, I am sorry that you had to go through all this just to get what should have been a given for your son. Being called into the principals office, just for voicing your thoughts on your own blog is plain wrong (although I am very glad that it has resolved the situation), but still .. it should not have even happened.
    But most of all I am very sorry that someone, maybe from your community, maybe not – but they live in someones community feels the way they do to write such an insensitive comment.
    Please do not let this person, or others silence you. This space is yours to post as you see fit. I find your writing honest, educational, compassionate, joyful and amusing at times. You have a gift for this and a strong and powerful voice. Write on.

    • Oh, I think getting called to the principal’s office was fine. The problem needed to be solved and I’d tried a few different things that weren’t working. I would have had to meet with her eventually anyway. I appreciate that she just faced the problem head on.

  23. theblondeview says:

    Perhaps Special Education faculty and School District personnel need to realize that parents of Special Needs children are NOT as isolated as we once used to be. We blog, we’re online via Twitter and Facebook, and we access a whole heck of a lot more than info on Google nowadays! We support one another in advocating for our children and we tell our story. Perhaps the Special Needs community was until now effectively publicly silent, but that’s no longer something School Districts can rely on. Knowledge IS power! Strength in Numbers!

    We are used to being different, judged even…so what’s the harm in reaching out to & linking arms with those in the same boat as us while hopefully educating the rest of the world at the same time? We take bigger risks, make harder choices just being our kids’ parents!!

    Keep up the GREAT work, both as an Advocate for Charlie and as an awesome blogger. You are definitely BOTH!

    -Renee’

  24. First you did not name the school outright. Second you had tried to resolve the issue before you blogged about it. Third I think someone at the school ought to have be able to figure out a sensible solution without telling you no and pulling out the lawsuit excuse.

  25. I don’t comment here as often anymore, but I still do read your blog en enjoy your straightforward approach to raising your child. Good post. Controversy isn’t bad when it gets you what you need. Usually somebody who’d comment with a false ID would do so because they’re insecure and because your post made them uncomfortable. They are uncomfortable because they know what you say is the truth.

    Say the mother of your commenter is an elderly lady who can barely stand. She needs some service. Your commenter will not bat an eye while somebody makes her mother stand in a queue until she collapses. Because they can’t make exceptions?

    Sure.

  26. I wonder what part of “Charlie cannot be sitting out in the heat for 45 minutes at a time for medical reasons” that person did not understand. You just blog on with your bad self, Katy.

  27. So glad to hear that his situation has been resolved! Not so glad to hear about how that happened. UGH! I love to come here and read about your experience with Charlie. Reading about your experiences, good and bad, gives me a lot to think about as I start to preschool process and how this will look for Emily. You definitely cannot please everyone all of the time. I don’t think you said anything in your previous post that was demeaning to another person – you were simply sharing your frustration about the situation – and rightfully so!

  28. Bravo! I never understand the negative comments/e-mails. Don’t like my blog post or my blog? I don’t care! Just feel free to stop reading me! And if you have somthing to, get your own damn blog! Very glad the negativity didn’t give you pause. We who do *get it* appreciate your blog all the more!

  29. As a former teacher AND someone with disability accommodations now in graduate school, I am peeved about the situation and about that comment. The point of an IEP, the point of accommodations is not to give anyone something special, it isn’t to give an advantage. In fact, it’s the opposite. It’s to provide the support needed to level the playing field, to support those who need it so that they can get the same educational experience as those who don’t need accommodations.

    There will be people who never understand this, who criticize others for it. But don’t let them stop you. Because it’s about Charlie. It’s not about them, it’s not about their criticisms or even what they think, it’s about your son, it’s about his life and his success. And I think you’re doing a really great job.

  30. The MOMMA BEAR is in us for a reason-!! Charlie is Charlie for a reason and you’re his mom FOR A REASON!!
    Keep speaking your truth-
    It makes those of us who don’t have a SN child think, too.

  31. Sorry you even had to write this. I think I said it on Twitter…this is why I’m sort of anonymous.

    On my old blog, I’d written a little something about a painful situation from my childhood and was verbally attacked by a family member. It SUCKED. And ALMOST made me quit.

    Glad I didn’t. Glad you’re not gonna either.

  32. I’d miss you if there was no more daily does of Bird. You are one helluva person with one helluva blog about one of the neatest little boys I know. Write on…you are real, refreshing and an inspiration to many.

  33. My blog went silent for a while for similar reasons. I don’t have a child with a disability, but I do have some serious health conditions that I think are worth sharing about – not in a let’s-draw-attention-to-Shannon sort of way but in a let-me-help-you-understand-what-life-with-a-chronic-illness-is-like and a if-you-have-a-chronic-illness-then-you-aren’t-alone kind of way. That led to a variety of comments that blamed me for my health – not eating enough organic, not praying enough, you name it. I’m not silent anymore because I’d rather be criticized than have no voice.

    I’m glad you’re not silent either.

  34. I love reading your blog. You will always be the best advocate for your child, since you know him the best. When I read the first blog post I was wondering what the outcome would be. Glad they worked something out so you can pick him up in a more timely manner. I don’t think you were asking to be treated special. You were just asking for something that was needed for your child. Keep it up! As for the negative comment…it is easy to be negative when you can be anonymous.

  35. Hugs and kisses. And please post more Charlie going to school pics, where he looks so little man like. I am so proud of you, and proud to “know” you.

  36. Ruby McGill says:

    I wonder if the person who criticised you has ever had to lift a disabled child; to dismantle or reassemble a wheelchair? If they had, I am sure their comments would not have been made. I am lucky in that the school my child attends has always made it easy for me to access the school grounds, allowing me to park in a Teachers Only parking spot so that I didn’t have to push the wheelchair so far. God bless you for your advocacy for Charlie!

  37. I definitely think your blog has value!

  38. How nice that they now understand that you have a PLATFORM from which to discuss the school’s BEHAVIOR and treatment of your child. I have a feeling that you’ll be like EF Hutton at that school from now on–when you talk, they’ll at least listen. Maybe every mother at that school should start a blog…!

  39. Keep fighting – you’re a great inspiration to us going through the same fights.

  40. Go Bird Go!!!

  41. WOW, Katy. their comment made ME mad. What they do for one they have to do for another? Um exscuse me, but you had legitamite, medical concerns.

    I love reading your blog and I’m so happy you’re going to continue. THIS is why we need to be out there, advocating and educating! I love that most of the commenters are supporters even if they don’t have a child with special needs. It’s important to be united because we are so often misunderstood.

    Thank you for fighting with us.

  42. I have been wondering a bit about this. I have a link to my blog at the bottom of my e-mail. I blog about school issues sometimes, but mostly after the situation has already been resolved. For various reasons I never name my kid, or any other person or place, and I wonder if that makes any difference. I’ve never had any complaints yet, but then I don’t have that many people that read my blog yet. In any case I don’t think anyone should have their nose out of joint over what you posted regarding the parking/pick-up situation. May I just say I have been SO enjoying being able to walk to school to pick my kid up? I’m glad you figured out a solution that works for you, and as for the naysayers…phooey on ’em.

  43. I haven’t commented or written before (am always taking a quick peek at your blog before running off to do PT/OT/Vision/etc), but today I felt I had to. I absolutely hate the “what they do for one, they’ll have to do for all” attitude. If everyone followed this philosophy, change would never occur for those who need it. Ugh! I am so mad for you and angry that we Moms have to deal with stuff like this on top of all the much more important things we take care of day-to-day for our kids. I’m so sorry that you had to deal with this, but thrilled that in the end that you got what you needed for Charlie. Such a shame the way it had to happen though. I’m a huge fan of your blog and it’s helped me tremendously with so many different things. I’ve been inspired because of your postings to start doing themed activities with our daughter and have also been reading your postings about equipment now that we’re venturing into this new territory. Please keep up the postings! Love reading them : )

  44. I’m so glad things worked out with transportation for our little Charlie.

  45. I am sorry you had to experience that with some folks. But I’m glad you take a stand up each day, I’m truly proud of you and wish more parents were like you and look to you as an example~!

  46. You have such an up hill struggle!
    But at the end of the day I agree with you it is all about and all for Charlie.
    So nanee nanee boo boo to all naysayers!!
    Hugs

  47. That is freaking ridiculous – how we have explain what we do with our time. More like defend really – bad enough to spend time away from our kid and even with a special needs makes us even more selfish.

    I was at a crossroads at writing or mentioning my kiddo’s autism or whether it would be like me exploiting it – when I interviewed a celebrity who had authored a children’s book on autism I found that by sharing we were all learning. I did not want to pretend that autism was now part of my life.

    You keep fighting the good fight – it is worth it for all.