Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Between Advocating for Autism and Special Needs and Protecting Our Children’s Privacy

In many ways, writing has been a saving grace for me. I started to blog here on Finding Ninee when my son Tucker was just three years old and a new attendee in a preschool autism classroom (PAC). Back then, I was overwhelmed, navigating the new waters of transitioning from Early Intervention to a special education school, putting away my dreams of a co-op montessori, and feeling pretty lonely. None of my friends had special needs children, and hearing that Tucker would catch up was ringing less true with each passing month and unmet milestone.

I started writing to share my experience of feeling like I was navigating “The Middle World” – one where the spectrum exists but an autism diagnosis does not. I figured that there were other parents out there who were also unsure where they fit in. I know now that they – you – are out there. That we are all, at times, looking for connections.

Today, I am grateful to be able to type the words that not only have I found in-real-life friends who accept my little boy exactly as he is, but an incredible community of writers, bloggers, parents of special needs kids, special needs adults, and well, all of you. This awe-inspiring global internets that we’re a part of. It’s pretty incredible, this WWW place.

Does that mean that I never feel alone? No.

But, part of me wonders if that’s part of the deal. One thing I’ve figured out is that all of us are frightened, worried, hopeful, and also incredibly brave and powerful.

Sharing my experiences as a special needs mom has been cathartic. Healing. It’s helped me to know that none of us are ever truly alone in what we feel. That no matter how isolating staring at the ceiling in the middle of the night feels, wondering and worrying while trying to focus on the simple act of breathing, another person has been there. Somebody gets it.

So far, for me, this process has been accomplished through sharing my little boy. Sharing his differences, his challenges, and his smiles and triumphs.

When I started writing publicly two years ago, I didn’t give much thought to sharing Tucker’s face online. If anything, I felt like it was important to show people that life with developmental delays looks as happy and magical and as messy and crappy and frustrating and imperfectly perfect as life lived typically looks.

When I write about Tucker’s challenges and celebrations, you get a sense of Tucker’s Tuckerness.

But, sharing his delight through photos brings both tenderness and truth to what I type. It’s a reminder that all of us – every one of us – are more the same than we are not. It’s a reminder that parenting looks mostly the same.

It’s a reminder that life just is.

Photos are a reminder that the layers of life are the same while also as different as we are.

They’re a reminder that Tucker, like Michael Jordan, sticks his tongue out while concentrating:

concentrating on homework

That he’s just a little kid who thinks wearing a too-small dog mask is funny:

too small dog mask

That he can’t draw carrots worth a shit:

Carrot drawing

And that he’s just a cool little boy, who thinks bubbles are awesome.

Happy little boy

So far, sharing and advocating has been good, beautiful at times. It’s been working. And I don’t want to change anything about that.

But, as I talked a bit about in my post after attending BlogHer 14, and how much the special needs breakout session sucked, I’ve been wondering, more and more, what the between part is. The place between advocating for special needs – reminding people that we’re more alike than different – and Tucker’s privacy.

I have to confess something: I’m not sure that I want the parents of Tucker’s classmates to hear the word “autism” associated with his name.

No, I am not embarrassed, or trying to “hide” anything. Tucker is who he is. The fact that he is behind his peers and jogs laps around the room every night to relax while making kinda a weird noise is our normal. And I’m cool with that. What I’m struggling with though, is whether it’s fair to Tucker.

While it’s obvious to people who attempt to have a conversation with him that he’s very speech and language delayed, I want the parents who hear about him from their children to know him from their kindergarten stories of unshared crayons and recess friends. I want them to meet him at our field trip tomorrow and meet Labelfree Tucker.

Special Needs are not scary

Which is where this whole thing gets a little bit tricky.

If I want to raise awareness that special needs and autism is not scary, then people need to be surprised out of their preconceived prejudices. Which, so far, has meant sharing. I know that the photos are not necessary, but I do think that they help.

I also want to be fair to my little boy. I want to be fair to the him that he is today, and the boy that he will become. I want for the people who meet him in this life to meet him without having a label in their minds.

I also want them to have a label in their minds and I want for them to redefine what they thought that they knew.

I’m still working out how to have both. How to have empathy, wonder, acceptance, privacy, respect, and have it all be okay. Have it all be just one more imperfectly perfect part of this crazy messy beautiful WWW we’re in.

I also want to offer a reminder that life with special needs will be just fine. It will contain surprises and heartache. It will contain uncontainable joy. It will contain hope.

Always hope. Maybe, only really old photos, though…

cuter than other babies

Yes, his shirt says “I know I’m cuter than other babies.”

 

This has been a Finish the Sentence Friday post, where writers and bloggers finish a sentence prompt.
Hosts:
Stephanie, Mommy, For Real
Kristi (me), Finding Ninee

This week’s prompt is “I know my child would rather I not reveal this but…” brought to you by Kelly of Just Typikal and her awesome guest host, Anna from Fitfunner.


  • Kenya G. Johnson - This is wonderful Kristi. Can you even imagine who you’d be if Tucker was Tucker and how many people who wouldn’t have been touched and learned so much by the both of you? I think it’s working – I think y’all are working.October 16, 2014 – 10:15 pmReplyCancel

    • Kristi Campbell - Kenya,
      Without who Tucker is, I cannot imagine who I’d be and I’m not even sure that I’d be able to call myself a writer, today, as I don’t think I’d have entered this blog world. Or, if I did, it’d be so different and how icky to think that it may have meant that I’d never have the tribe that I do (as in you). And, thank you. You saying that we’re working is big huge. I appreciate it so much.October 17, 2014 – 11:58 pmReplyCancel

      • Kenya G. Johnson - I feel the same way. Even though I wrote before and aspired to be an author – I say the having Christopher definitely made me rediscover myself.October 21, 2014 – 10:00 amReplyCancel

  • Allie - When you figure it out, will you let me know:)? I don’t know the answer either. Because after I posted about Bear a few weeks ago – I felt like I jinxed myself. And when I finally post this weeks FTSF (it’s been a crazy week – it’s written, but I need to sleep on it), I’m not sure if it was cool to write it – and it’s not abut autism!!! But seriously – I GET t! Tucker is walking the fence and you want him on one side, and I truly believe that’s where he’ll be – but talking about the other side, could mess it up for him….October 16, 2014 – 10:22 pmReplyCancel

    • Kristi Campbell - SIGH Allie. Yes, if I EVER figure it out – which seems doubtful – I will absolutely share. Also your FTSF was perfect and well yeah, Tucker’s so walking the fence. I saw both sides of it today during a field trip with him. I will *have to* (or not) write about it all soon…October 18, 2014 – 12:00 amReplyCancel

  • Janine Huldie - Aww, Kristi I was actually thinking about you today knowing that the field trip was this week. I know it is going to be a wonderful trip and can honestly say all will see Tucker for the sweet amazing little boy he is, because quite simply that is just Tucker – perfect in his own way 😉October 16, 2014 – 10:25 pmReplyCancel

    • Kristi Campbell - Janine, it was today and it really WAS awesome but well, I could see the benefits of both sides of this post and sharing any of it online is scary, right? But yeah, he’s perfectly Tucker…October 18, 2014 – 12:06 amReplyCancel

  • Mike - Kristi, as far as posting or not posting his pictures that is completely understandable on your questioning it. Whatever you decide please know that this reader will look at and read your blog with the same amazement and joy as I always have. Another thing occurred to me while reading this in your message and sharing and working hard for the cause of autism with him – your writing and presentation is always absolutely PERFECT in my book. If it’s not broke, don’t fix it. Lastly, you share a love story between you and Tucker and it’s one that I absolutely love. Thank you for letting me in as a reader 🙂October 17, 2014 – 1:30 amReplyCancel

    • Kristi Campbell - Mike!!!
      Could you BE a better commenter? No, no you could not because thank you so so much for wanting to know more about my little boy, and our life together and well, for all of it. Thank you for wanting in. For real.October 18, 2014 – 12:12 amReplyCancel

  • Lana - Just the fact that you’re giving this so much “thoughtful” thought is wonderful. I love reading about your son because he reminds me so much of my 15 year old nephew. I also struggled with what/how much to share when I started blogging. My kids are older, so I was able to have a discussion with them about it, and I always run things past them if I’m blogging about them. Personally, I think you have already found the perfect balance in your writing about your son.October 17, 2014 – 1:48 amReplyCancel

    • Kristi Campbell - Lana, THANK YOU! I so very much appreciate you saying that I’ve found a balance in writing and sharing, I’m still not sure where this will all end up and well, I am grateful for your perspective on it so much.October 18, 2014 – 12:23 amReplyCancel

  • MyTwice BakedPotato - I love this and I understand the questioning about privacy..,I have those myself. I’m not sure how long I will write about specifics about my TBPOctober 17, 2014 – 2:12 amReplyCancel

  • Kelly McKenzie - You raise an interesting point Kristi. I have struggled with the privacy issue as well. My blog has transitioned quite a bit from mentioning my two by their first names and putting up old photos of them to now just referring to them as “my son… my daughter.” If I post a photo of them it’s taken from behind. Why? A tech savvy friend who has his own tech company took me aside last Christmas and honestly scared the beejeesus out of me. “I can’t read your blog anymore Kelly. You share far too much about your two with photos and names and …. ” Oh my god. Looking back I think he did go overboard but I still feel I need to honor their privacy. Silly? Maybe. I do wonder how I would have felt about the whole privacy issue if I started blogging when my two were small. October 17, 2014 – 2:15 amReplyCancel

  • Crumpets and Bollocks - I was just thinking of your blog when I wrote my post. I have a child on the autism spectrum, and I wonder how much of her privacy regarding the HIPAA protected diagnosis I should be divulging on the internet. I remember you wrote about this before, and it’s a tough question to answer. I feel like I’m never going to find it, but today, my post about Gabrielle is about her wall art where I mention something incredibly embarrassing she’ll probably yell at me in 10 years over it, but I did tell her that I was posting about her today. She’s quite happy about it, so far. October 17, 2014 – 2:38 amReplyCancel

  • Brittnei - I can totally see your dilemma. I do wonder then about your experiences. Have they ever felt bad for Tucker because someone was making fun of him or do you just think about times that you’ve seen people make fun of other children and you just don’t want that for him? I wonder about this only because you sharing with all of us and with your friends, it seems based on what you write that many have surprised you with how wonderful they treat Tucker despite what delays they might see that he has. So I wonder if you continuing the way you have could actually be a positive thing and could open them up to see what special needs truly is not and so they can see how normal and wonderful he truly is. At the same time, I can totally see how you would be concerned about how the label could negatively affect how people perceive him too. In the end, you seem to think things through so nicely that I’m so positive you will find a balance where you feel comfortable.October 17, 2014 – 4:26 amReplyCancel

    • Kristi Campbell - Brittnei,
      So far, as far as I know, nobody has really made fun of him. It’s more that now, he’s in a mainstreamed class at kindergarten, and I can see that the other kids are so much more ahead in language and writing and drawing and interacting. Tucker loves to play but he is a little more awkward about it I guess, unless it’s something he gets – like tag. He’s super cute about engaging with friends but I have seen him try to connect and be ignored. Mostly, at this point, it’s just me worrying, maybe, although I am not sure about that. I agree with you that it’s important to share because he IS normal, even with some challenges – all kids are and I think that’s an important message but I also worry about labeling him if that makes sense.
      And thank you for getting it and for your friendship!!October 18, 2014 – 12:42 amReplyCancel

  • Kathy Radigan - Kristi I sometimes struggle with this myself with my writing about my sweet Lizzy and even my boys issues with learning differences. There is a very fine live between my sharing about our life as a way to reach out to others, connect and shed light on the issues that effect us, and me telling a story that I don’t have a right to share. I have also not totally figured it out yet but thanks for letting me know that I’m not alone in so many ways! xoxo Lovely post. October 17, 2014 – 6:06 amReplyCancel

  • Lisa @ Golden Spoons - I think you and your blog and Tucker have done some wonderful things. Even as a former special needs teacher who taught kids just like Tucker, you have given me new perspectives and new ways to think about kids/moms/families who have special needs. A big part of that has been your willingness to be open and to show that Tucker is just as much “typical” as his is “not typical.” That being said, I get it. As our kids get older, it is harder and harder to figure out what to share and what to keep off the internet. I struggled with this topic today and, in the end, went completely off the deep end in a different direction with my post!October 17, 2014 – 8:19 amReplyCancel

    • Kristi Campbell - Lisa. Thank you. I do think it’s important to be open and honest but well…. I know that you get the other side of it too and that you touched on it in your own FTSF post today… and yeah, this internet place. It’s amazing and awesome but also scary and well, yeah. And by the way your post was perfect!!!October 18, 2014 – 12:50 amReplyCancel

  • Katy @ Experienced Bad Mom - I think you nailed this privacy-sharing issue on the head – that it is so complicated, so emotional, and so personal. And that sometimes it shouldn’t be, and I wish it wasn’t, but yet it is. I love that you found support and healing by sharing and I love the photos of your little boy. He looks perfect to me and when you describe his struggles and I see the pictures, I still think he is the perfect version of him that he is supposed to be.October 17, 2014 – 9:04 amReplyCancel

    • Kristi Campbell - Thank you so much, Katy!!! He IS perfect, and who he is and yeah… I’m not sure about the privacy thing either. I hate that we even need to have the discussion but I also know how important it really is.October 18, 2014 – 12:53 amReplyCancel

  • Erin Gaynor Putman - I wrote about this very topic a while back and the comments were so interesting and thought provoking. I have special needs mama friends who waited a long time before disclosing their child’s dx so that the students and teachers would get to know their child first before hearing the label. Obviously I’ve gone in the other direction with my blog and the advocacy I do for Williams Syndrome….But I struggle with it, too. Is it fair to my son? Is it helpful? So many things to consider. Thank you again Miss Kristi for making me think.http://musingsbymama.com/2014/02/labels-should-they-stick/October 17, 2014 – 10:32 amReplyCancel

  • Emily - You are so right about the label issue being a tricky one. I was fiercely protective about not labeling my son, but then I discovered that in some cases (some being the key word here), it is not only hard to avoid, but necessary to label them. It sucks but it’s true. Here’s an example: I am now trying to appeal to the standardized testing people (whoever they are) to get Big Dude an extended time accommodation when he takes the ACT. I have recently had him re-evaluated by the school district in order to hopefully make this happen. The school district has told me that if I want him to have a shot at this accommodation, that we have to go with such and such label. And suddenly, I found myself saying, “fine – go with it.” And yet, when I had a conversation with my neighbor the other day (who thinks she knows all about his issues and is nosy and a know-it-all and boy do I need to rant about her), I refused to use any label with her because it’s a) none of her business and b) I felt like she was already judging him and assuming he was a certain “way” , etc. And here’s one more “yet”, and then I’ll stop. When it came time for us to share with Big Dude back when he was about 13, why he had these challenges, we gave him a label for himself because we felt that the information would be empowering to him, for him to better understand himself and hopefully deal with his challenges better. Sorry for this ridiculously long comment, and I hope a small part of it made a little sense. 🙂October 17, 2014 – 10:43 amReplyCancel

    • Kristi Campbell - Emily –
      YES! What you said! Recently, at Tucker’s bus stop, the following happened regarding a child who is ASD and people know I guess.
      Other Nosy Mom: I noticed “Pat’s” cute new haircut!
      Nanny: Yes, well Pat got into the scissors, so we had to take to get it cut pretty short
      Other Nosy Mom: (totally disregarding the nanny’s laughter about how Pat got the scissors) Oh! Is Pat okay with getting haircuts?
      I mean wtf. It was just a kid story. Not about the spectrum, ya know? That’s part of why I haven’t said anything to The Other Moms about it. Sigh. It’s so hard to know what to do!! And like you shared, I can see that it will just get more complicated as he gets older and needs things like longer test times. Thanks for your totally awesome comment. I always appreciate your Big Dude stories that are so inspiring and such a testament to you being an awesome mom and advocate!October 18, 2014 – 12:21 pmReplyCancel

  • Beth Siebert - Hi Kristi,

    I struggle with this as well. First I use old photos in my articles and change my son’s appearance regularly.

    But I look at the model of the gay community in the 1980(s) who were dying in droves of AIDS. We can not get politicians to say the word Autism in DC. There is absolutely limited if no therapy, treatment, schools which will take children with autism unless it is a lock down segregated institution. If we are to advocate for our children because God knows our politicians are not then we must share our lives.

    What is being done to the population with autism right now is horrible. Only when we share the inhumanity of our situation and the struggles of our lives are people forced to care. Many of them still look away or stare. Law Enfocement, who are untrained in dealing with autism, are often called to handle individuals with autism. An individual with sensory integration issues has a horrific time with the sirens and lights associated with law enforcement. This is a real issue and it is not being addressed across this nation. If anything law enforcement because they confront in an offensive sensory integration issue make the individual with autism complete have sensory overload.

    Our only hope is to educate, advocate and continue to network. You and many other families are not facing this now but I have read estimates that in the next five years law enforcement will be overwhelmed with calls about individuals with autism, It will consume them. If we continue sharing, advocating and educating that maybe a significantly less number, We are the experts in our children and even in their autism, SILENCE is our greatest foe,

    However, old pictures is not a bad idea.October 17, 2014 – 11:39 amReplyCancel

    • Kristi Campbell - Beth,
      I agree that silence is our greatest foe but I also think you’re right that using old photos is not a bad idea, especially as Tucker gets older. Obviously a bunch of five year olds won’t be reading this blog but their parents may stumble on it and I’d rather they not judge him without knowing him. Personally, writing about our experience has been really positive for me but I worry… a lot.
      The law enforcement issue is horrifying and frightening – people need to be so much more educated on autism and special needs in general (thinking about the horrible incident in the theater with the young man who had Downs Syndrome). I really appreciate your insight and thoughtful comment. Thank you. Here’s to us making this world of ours a better place with education and awareness.October 18, 2014 – 12:44 pmReplyCancel

  • My Inner Chick - Hi, Kristy,
    I think I told you already.
    I work in a classroom w/ 10 autistic students.
    They honestly crack me up: their honesty, perspective on life, observations, non-filters.
    For example, Tyler was going to buy all of us (GIRLS) tiaras. What was awesome about that was, he didn’t think it was funny or strange…. He just thought we deserved them! AHHHHHH.
    Being different is magical.
    Being different will change the world.
    If your son is labeled “Autistic,” it merely means he’s wonderfully and beautifully and fabulously unique.
    As for me, I was labeled, too…as a “Stutterer.”
    You see, I have too many words inside my head.
    Perhaps autistic kids do, as well.
    Love from Duluth. xxXXOctober 17, 2014 – 11:49 amReplyCancel

    • Kristi Campbell - You do deserve tiaras! We all do! And that’s such an awesome story!! I didn’t know that you were labeled as a stutterer but I love the imagery of having too many words in your head and that maybe autistic kids do, too. Sending love right back to you in Duluth you awesome sweet thang.October 18, 2014 – 12:56 pmReplyCancel

  • Anna Fitfunner - Hi Kristi: I think that you raise two questions: how will you feel about Tucker’s autism, and how will Tucker feel about it. For you (and me, as a parent of an autistic kid) we’ll have aspirations, and try to help our kids to connect with others. As for Tucker, autism is going to be his life. He might catch up in lots of ways (and I certainly hope that he does), but he will develop a sense that he is different. He will need to come to terms with his autism, and how it will impact his life. I think that for a kid like Tucker, that adjustment and acceptance of who he is can be the toughest part of growing up. Way tougher than how he relates to some adults and kids in kindergarten. And when you absolutely nail it with Tucker (’cause you know that you will), having toughed out a sense of identity with Tucker is something that both Tucker and you will want to share with the world!October 17, 2014 – 12:09 pmReplyCancel

  • Katia - SO realatble, my beautiful friend. As i often tell you after reading your posts, I feel not very different from you in this regard. Understandably there’s am additional layer to your deliberations, but I’m becoming just as conflicted as you about sharing my kid, his vulnerabilities, sensitivities, challenges and tantrums as he grows (and I’m only referring to one kid, because I still feel quite safe when it comes to Daniel). I have no solution for this either, but I’m curious and would love to have a dialogue with you about this at some point. Whatever you do, it is so evident and clear that you are guided by all encompassing love for this incredible little boy.October 17, 2014 – 12:22 pmReplyCancel

    • Kristi Campbell - Katia,
      I love your comments. And you. I’d really enjoy talking to you more about this. I think it is an issue for every parent who writes publicly – and I know exactly what you mean about still feeling safe when it comes to Daniel. It’s just easier when they’re young for some reason. I hope you’re having an excellent weekend!October 18, 2014 – 1:42 pmReplyCancel

  • Lisa Ann Bonchi Wilner - Thank you sharing this. I thought you might like to hear from a parent of an older chile. Our son is going to be nineteen and is in college, drives and has a part time job. He has high functioning Autism and little to know Aspergers traits. His biggest challenge has always been Semantic Pragmatic Language Disorder and socialization. We did not discuss his Autism with him until he was older and comprehended that his life was a different and harder than his peers. We always told him that he could do anything that other kids could do but may be harder and take longer. We took pride in his success and grades as I know we all do. I am sharing because he now has pride in his Autism and what he has accomplished in spite of it being harder for him. We never let autism be presented as a curse even though as his parents we felt like it at times. The IEP fights, etc. We have always talked about it a as challenge and FOUGHT not to allow it to become a label. Others will have very low expectation once the word autism comes into play. Even educated professionals. We always talked about Autism as if it was wearing glasses and everyone has issues of some kind. I do recognize that we got lucky but we will never forget the persevering in a corner, parreoll playing, melt downs in the mall, the dreaded IEP meetings and fighting for inclusion. We have to believe in our children and the possibilities even when others don’t. I just want to share that in college a great deal of the students have excepted Ben for who he is. He has a group of friends and some have Aspergers and other are “main stream”. He leaves for Rowan University at seven am and returns at seven at night. He hangs out at the college but still needs the safety of home. He will not live there due to fire alarms at two in the morning and smoking in the dorms. Our hope is that we get him to share an apartment with some friends before he graduates. He presents his autism as a language disorder until he is comfortable and trusts someone. Of course at that point they usually have an idea that he is a little different but it continually seems to amaze me the things that comet out of peoples mouth when he tells them. Keep believing in your children and fighting for them. Thank you for this page. October 17, 2014 – 1:02 pmReplyCancel

  • Scott Hansen - I talked to the twins for the first time about my blog before I started blogging under my real name. I asked them if they had any preference as to how I referred to them.

    “Why can’t you use our real names?” one of them asked. And I had to explain to him that blogs are very public and that once something is out there it’s impossible to take it back.

    I got a grunt of acknowledgement and no answers to my question.

    Privacy online is a tough to control and I did not make the decision to blog transparently lightly. There’s a chance my decision could blow up in my face. I think you are right to wonder what impact this could have on him, though I optimistically think that it will have no impact on him. I think the work you’re doing on this blog is excellent and the pictures truly do show what it’s like to have a special-needs child. People do need to see that there’s nothing to be afraid of. October 17, 2014 – 1:42 pmReplyCancel

  • Roshni - This is a struggle for me too, as with many parents, I guess. How much to put online about my kids! My older kid knows about my blog and knows what a blog is and he’s not comfortable any more about me putting his stories out there. I totally respect that and have really cut back on what I say about my kids now! Also, I’ve stopped using their photos after what I learned about stolen photos.
    I love that you started this site wit such noble and well meaning intentions, Kristi! It’s sad how easily this can be misused and I completely understand your need to protect your little boy!October 17, 2014 – 1:59 pmReplyCancel

    • Kristi Campbell - Roshni,
      Yeah, I think it’s a struggle for all of us to are publicly “out there” with our kids. Thanks so much for getting it – I’ll have to figure the best way to keep reminding people that special needs and developmental delays are not scary and that these kids are just kids… but maybe with less photos. Which is a little bit of a bummer for me for some reason but I think probably best…October 18, 2014 – 1:57 pmReplyCancel

  • Stephanie Smith Sprenger - I love every word of this. This is so beautiful, honest, and real. You made your struggle so accessible to other parents- whether they struggle with a special needs diagnosis or whether they struggle with how “out there” they should be when writing about their kids. Whatever it is, you made people feel less alone by writing this post. So thank you for that. I loved it. And love you. October 17, 2014 – 3:01 pmReplyCancel

  • Nicki Gilbert - Yesterday I read a beautiful essay from a woman who went bra-shopping with her tween-daughter for the first time. Most of the comments were grateful appreciation for sharing this event so honestly and openly. One criticized the writer for divulging this private moment with her daughter: “I wonder how your daughter feels about you sharing these very intimate moments with a very wide public.”
    It’s tricky, it’s complicated, it’s all the things you said. But what is true for me as a writer is the willingness (and ability) to share honestly, to share what’s REAL. And if I’m not going to do that that, then I have no business writing. These are the moments, the photos, the experiences that are real – they are what make writers writers, and what make our writing relatable, resonant and relevant (how’s that for awful alliteration lol!) Beautifully honest post, as always. And fantastic pics of Tucker! xoxoOctober 17, 2014 – 7:12 pmReplyCancel

  • jaklumen - Hey there Kristi–

    I’m glad that you continue to write. Things are still tough for Cimmy and I figuring out resources for Boy. We haven’t been able to get ABA therapy yet, but we’ve doubled down on Positive Parenting Program (Triple P) and Parent Child Interactive Therapy (PCIT). Yes, they are hardly autism-specific, but it’s what we can get.October 17, 2014 – 8:18 pmReplyCancel

    • Kristi Campbell - Jaklumen,
      Sigh to you and Cimmy still figuring out resources for Boy but one thing that I do really think is that all of the therapy that helps the behaviors that you’re working on help, if that makes sense. Sometimes, it’s been the most surprising things that have helped Tucker make progress. For example, his teacher was working really hard to get him to make the sound “f.” It wasn’t working at all but he was trying. One day, he was lying upside down on the slide at the playground and he wanted my phone to see what he looked like in the camera app. I said “say Phone!” and HE DID! He was motivated to do it because of the result he’d get at the end. So I do think that your programs are probably helping and I’ll keep positive thoughts for you that you’re able to get ABA services!!October 18, 2014 – 2:11 pmReplyCancel

  • AlwaysARedhead - When I blogged about my daughter’s depression when she was attending university I asked her permission. Right now you can’t ask your son’s permission but you can blog respectfully for him.October 17, 2014 – 8:29 pmReplyCancel

    • Kristi Campbell - Yes, you’re right… I definitely can blog respectfully for my son. Thanks so much for your comment!October 18, 2014 – 5:37 pmReplyCancel

  • Tatum - great post, Kristi, and so true. How to deal with our issues, as parents, and the importance of raising awareness about special needs … And letting our children define their own identity. It’s one of a myriad of reasons of why I’m on a blogging sabatical. Your work is important, your voice and perspective are important. I will respect you and cheer for Tucker, pictures or no. Xoxo and I miss you.October 17, 2014 – 10:31 pmReplyCancel

    • Kristi Campbell - Tatum! So so awesome to see your sweet self over here. I miss you too. And yeah, how to let our kids define their own identities is so important… I know that helping parents feel less alone in their struggles matters a lot as well, but not as much as Tucker matters. I still hope I can figure out how to keep sharing but protect his privacy better. I actually wish I’d thought more about it when I started blogging but well.. better late than never. xxoo back at ya, Sweetstuff.October 18, 2014 – 5:39 pmReplyCancel

  • Sarah - Yep. The constant debate. How much to share. I’m late here, and I bet I don’t have anything to say that someone has not already said, but I get it. And his handwriting looks amazing!October 17, 2014 – 11:12 pmReplyCancel

    • Kristi Campbell - Sarah,
      There are little dots to follow for the handwriting. Trust me, without those dots? Um, a pretty big struggle for him actually. And thank you for getting it. It really is a constant debate…October 18, 2014 – 5:45 pmReplyCancel

  • Marcia @ Menopausal Mother - I’m so glad that you took to blogging a few years ago! I think you’ve touched the lives of SO MANY of your readers, bringing a new sense of awareness and compassion with your posts. I’ve said it before and I’ll say it again—you’re an AWESOME mom!October 17, 2014 – 11:53 pmReplyCancel

    • Kristi Campbell - I’m glad I started blogging, too, Marcia. Thanks so much and you’re a pretty awesome mom yourself there, lady!October 18, 2014 – 6:18 pmReplyCancel

  • Beth Clay - I read your post this morning, your posts always make me think..I feel like I have to let them sink in a little before I comment… Especially with this post, I identify so much with what you are saying. With Cooper there is no question of his lable so I have never second guessed sharing it. I have friends who have struggled with this issue though and it’s a hard one especially when they begin to understand the Autism and the lable themselves. You are doing a great job! October 18, 2014 – 2:46 amReplyCancel

  • Courtney Yawn Stephens - The struggle that you describe is one I have had recently. I have a handsome boy but will he possibly be private like his dad as he grows? I want to honor him by creating awareness but also honor him by others making up their own mind about him. So I love the notion of shocking people out of their ideas on Autism. I know your world, like mine was a different understanding prior to having a child with ASD. So thank you, I think I will ponder this more. October 18, 2014 – 2:55 amReplyCancel

  • Tatanisha Pitts-Worthey - This is something that I have struggled with and haven’t really dug into a ton of personal or more of our experiences posts about Autism on my blog. I have twins that are high functioning and one of them will read the blog posts from time to time. They know they have Autism, but we don’t use a label to stop them from being the best they can be. However because I want to respect their privacy, I have been very reluctant to share their experiences or I will give a light coating on the situation. I do want to share experiences with other people, but it’s hard. Thank you for your post, this has been encouraging! October 18, 2014 – 4:33 amReplyCancel

  • Chris Carter - Here’s the thing. Tucker is LIFTED up here- by his mama. He is explained, discussed, loved beyond MEASURE, dreamed about, and embraced with the deepest kind of love there is…

    The love of a mother.

    I agree- pictures make him… *real* to me. I can take in his eyes, his smile, his precious hair and gorgeous eyes. I can *SEE* him… as you do.

    That is something. As are you words. Always.October 18, 2014 – 7:56 amReplyCancel

    • Kristi Campbell - Aw, thank you Chris! Seeing him as I do is a big something. It’s what makes it the very hardest to think about not sharing him so much… I want to but I don’t want people in his life to have any assumptions about him ya know?October 18, 2014 – 6:32 pmReplyCancel

  • Yvonne - Kristi, ss I read this, what struck me was that I had (and still have) the same concerns about writing about my children and neither of them have special needs.

    When I started my Inquiring Parent blog I used aliases and didn’t even put my name on the site. I wrote more about our family than I do now, mainly using the inquiry process to look at how stressful beliefs affected my parenting. My older daughter had a lot of illnesses and struggled with depression and panic attacks as a result and I didn’t want people to judge her because of that. I’ve never posted anything without checking first with my daughters, but if we don’t know the implications we can’t expect our children to. A few years ago my older daughter started blogging on Tumblr and shared information in her profile that I felt might put her at risk of attention from predators (using words like “socially awkward,” revealing her age.) She didn’t understand the implications at all, but she did change it when I asked her to and now she’s more savvy (and has a far larger following than I do.)

    Mostly, I’ve done what you are considering and used photos from when the girls were little. I guess in an ideal world it wouldn’t matter what we shared, because people wouldn’t judge and would gain in understanding. But people do judge, and so as parents we walk the fine line you describe so well. Is it fair to share information and photos whether or not our kids have special needs? I don’t know, but I do understand your dilemma very well.October 18, 2014 – 11:12 amReplyCancel

    • Kristi Campbell - Yvonne,
      You make a good point – if WE don’t know the implications of sharing online, our children don’t either… the thing is, I so want to share but well.. like you said, we don’t know the implications and that’s worrisome at best. I love that your daughter blogs as well! Another writer in the family! I also get that a teen may not think that saying she’s “socially awkward” is a flag but jeez it’s a huge scary place this world of ours. And really when it comes to the special needs part of sharing Tucker – I definitely think that I’d have the same concerns were he typically developing. The special needs part just adds another layer of concern – people not necessarily out to do any wrong by him but who make make assumptions about him because of a label, if that makes sense.October 18, 2014 – 6:37 pmReplyCancel

  • Deb @ Urban Moo Cow - Loved this and get it. Even for my “normal” kid…. xoOctober 18, 2014 – 3:11 pmReplyCancel

    • Kristi Campbell - Thanks, Deb and yeah, I think it’s really a concern for all parents… xo back at you babe!October 18, 2014 – 6:38 pmReplyCancel

  • April - He thinks bubbles are awesome because they ARE!

    I struggle with the amount I should share online. I see some blogs who bare it all and wonder what’s wrong with that? I haven’t heard of the backlash. Then I see others that use aliases. I do a mix of both, using aliases and using current pictures. I guess we’ll have to see what the future holds.October 19, 2014 – 10:46 amReplyCancel

    • Kristi Campbell - April –
      Bubbles ARE totally awesome and I haven’t really met anybody who has had a problem with sharing… it’s more that I worry that Tucker will be labeled because of this blog and he may not want that. Thanks so much for your comment!October 22, 2014 – 9:50 amReplyCancel

  • Tamara - I also can’t draw carrots for shit, and I love bubbles.
    Scarlet sticks her tongue out while painting. I ADORE it.
    With Scarlet being five, I’m starting to wonder more about privacy and the like. She’ll be learning to read at some point. I hope?
    I’ll just have to have another baby so I can keep writing about tiny children. Yup.October 20, 2014 – 10:15 amReplyCancel

  • Kelly @OneQuarterMama - I wrote a similar thing here: http://www.onequartermama.ca/2011/10/permanency-of-internet.html

    I don’t use tons of pictures and certainly not his real name. My method is to judge whether I would tell a complete stranger these facts at a party or not. So certain things we keep to ourselves and I don’t think that takes away from the integrity of blogging.October 20, 2014 – 12:25 pmReplyCancel

    • Kristi Campbell - I agree that the things we keep to ourselves doesn’t take away from the integrity of blogging. I do want to raise awareness for special needs but I don’t want to give my son a label that he may not have otherwise if that makes sense. Thanks so much for sharing your post about internet privacy as well!October 22, 2014 – 10:00 amReplyCancel

  • Dana - There have been times when I’ve read something a mother has written about her child, and I cringe because I know my kids would never want me to share something like that. I have NEVER cringed over anything you have written, and I would tell you if I did.

    I think you’ve balanced openness and honesty with discretion and respect for Tucker’s privacy. It will be harder to balance as he gets older, but you’ll deal with that as it comes. Trust your instincts – no one knows Tucker and how this space will impact him more than you do. If you haven’t figured it out yet, that’s okay. You’ll get there.October 21, 2014 – 11:24 amReplyCancel

    • Kristi Campbell - Dana,
      Thank you for saying that you’d tell me if you cringed over something that I have written. I know you would and I appreciate that! And thank you. You are wise wise. I appreciate you believing that I’ll get there!October 22, 2014 – 10:02 amReplyCancel

  • Out One Ear - Linda Atwell - I for one, hope you don’t decide to quit sharing. It would be a loss to all of us. I too struggle with this privacy issue and Lindsey is 34. I’ve asked how she feels about me sharing and she’s ok. She says she knows she inspires others and she’s glad about that. Right now, there are things I’m not sharing to protect my daughter’s privacy. At some point, I’ll be able to share, but right now, in the middle of chaos, I don’t think I should. I think I need to let the dust settle and really determine where we are before sharing. I think you will protect Tucker when you need to. You will share whenever/whatever is right to share and you won’t share the rest. Until it feels right. I love your pictures and your writing and your love of your son. Hugs to you.October 22, 2014 – 2:51 amReplyCancel

    • Kristi Campbell - Thanks so much Linda! I don’t think I’ll quit sharing, but I do wonder if I should back off on current photos for now until Tucker’s older and can maybe understand what this huge internet place is, if that makes sense. I hope everything is okay with Lindsey and Nick! Hugs back, friend.October 22, 2014 – 10:07 amReplyCancel

  • Kerri - First, I love your honesty. I adore that we were friends before we had to worry about you becoming famous and all. And I get this fear of yours. I find as Abby is getting older I am not sharing as much. She knows about the blog and unlike Tucker I can say to her, hey is it okay if I write about this?

    Bridget is another story. She doesn’t know. Unlike Tucker she never will know. Unlike Tucker her friends and their parents will always be able to tell that Bridget, is well, Bridget.

    I think it is a very fine line, in your case. On what you share about Tucker going forward. I don’t have the answer, sadly. But I get the struggle. Hugs my friend.October 22, 2014 – 10:22 amReplyCancel

    • Kristi Campbell - HAHA Kerri. Infamous maybe, to like my husband. And yeah, I get not sharing as much about Abby. When it comes to Bridget and Tucker though – is it fair? I mean I really WANT to advocate but at the same time… well. Thanks for the hugs, you, and thanks for getting it!October 25, 2014 – 12:57 pmReplyCancel

  • Don - I haven’t worried about privacy nearly as much as I probably should, but I figure my wife will tell me if I need to do so or whatever. Tucker’s peers will judge him based on his being Tucker at school and on the playground, etc. They won’t care what you say about him or what any of us think about him. They’ll love him for being one of their own because kids are cooler than we give them credit for.October 22, 2014 – 12:05 pmReplyCancel

    • Kristi Campbell - You’re so right that kids are cooler than we give them credit for. I just hope the kids in Tucker’s class are nice about him not being as good as some of them at cutting and drawing and stuff… sigh.October 25, 2014 – 1:00 pmReplyCancel

  • Elizabeth - Very thoughtfully written. The balance between sharing enough so that it can be helpful to others while maintaining your child’s privacy is a tricky one and an important one to consider, regardless of how you decide to proceed.October 22, 2014 – 1:42 pmReplyCancel

  • Lisa @ The Meaning of Me - Oh, look at me…late to the party, as usual! Know why? It’s because your posts are so very thoughtful that I can’t digest when I’m overtired, cranky, sick, or some other thing that I always am lately.
    I think you strike a nice balance between privacy and advocacy and awareness. The question of what Tucker is OK and not OK with is so complicated because he’s really just too young to truly voice an opinion.
    For what it’s worth, I have talked about Kidzilla on the blog, but only in the most general sense. And I never use photos, but that’s my own fear. I have a thing about her image being on the Internet, whether it’s my blog or not. I have thus far not shared much about her ADHD or associated co-morbidities (I hate that word – let’s say co-conditions instead) nor have I shared much about my own. I guess not for any reason other than that wasn’t really the purpose of my blog up to this point – it was really about me coping with the two years of unemployment we just went through and all that goes with that. But now, I’m considering sharing more about that topic and I’m really struggling to decide if it’s right, if it’s fair, if it’s going to affect her in some way. For example, I sincerely doubt anyone at her school knows of my blog. But let’s say they did. Do I want the moms of her classmates reading every little thing about her? Or do I need to put my money where my mouth is and say I’m open about her circumstances and my own? I struggle with it every day and I have no idea what the right answer is. I think I’d be OK with sharing my story and my details because I’m an adult who can defend myself and I’ve managed to cope pretty well and lead a successful and productive life with my ADHD. But for Zilla…while she knows herself well, she has so much to learn and experience and I just don’t know what the answer is.
    So that’s my two cents. If you figure out the answer, please let me know, too, OK?
    XOXOXOOctober 24, 2014 – 10:41 amReplyCancel

    • Kristi Campbell - Lisa,
      So sorry to read that you’ve been overtired and sick recently. I hope you’re feeling better!!
      And yeah, it’s such a hard call to know what to do when it comes to sharing. With Tucker, part of me wants to share him because he isn’t what too many people still think of when it comes to autism and special needs and I have felt like putting his adorable face to it helps people to realize that all of our kids are just kids if that makes sense. But, now that he’s in mainstream kindergarten, I wonder if it’s fair. Part of me realizes that kids will already know that he’s different but part of me thinks (hopes???) that maybe they don’t and why let them in on it. Ugh. I’ll definitely let you know when I figure it out. Or, I’ll just whine about not knowing what to do on this here blog 😉October 25, 2014 – 1:12 pmReplyCancel

      • Lisa @ The Meaning of Me - Well, it’s your blog and you can whine if you want to… 😀
        There are days I wish more people knew Zilla was “different,” to use your word, because it goes a long way toward explaining some of the things she does or says. It hurts me to the core to think their interpretation is that she’s whatever word they might choose and not simply that she has what she has and it’s all part of the wonderful package of her. Some people tell me “don’t let anyone put that label on her” and my question is always why not? If she had a heart condition, or diabetes, or a severe food allergy, wouldn’t we want the label so that people could be aware and help her? Would we hide those things? Of course not. But when it’s something else – ADD, autism, LDs, ODD or whatever somehow we are instantly afraid. Know why I think that is? Because it is human nature to fear that which we do not understand. So many people don’t understand the ins and outs of these conditions and so they make assumptions out of ignorance and the whole negative perception cycle begins.
        It sucks.
        But you don’t. You’re awesome! XOOctober 25, 2014 – 2:17 pmReplyCancel

        • Kristi Campbell - HAHAH and dangit now that song will be stuck in my head FOREVER. But yeah, I get what you’re saying about Zilla. If you ever want to chat offline, I’m here. There’s tons of stuff I don’t say about Tucker either, even though it looks like I’m pretty open here. It’s hard. I want to do good. We all do. But yikes. We are afraid and I wish we weren’t. We should chat on the phone. Or meet by that stupid Thomas railroad.October 26, 2014 – 11:02 pmReplyCancel

          • Lisa @ The Meaning of Me - Haha – yeah, we probably should. E-mail me.October 27, 2014 – 9:12 am

  • Nina - Kristi I think your photos do what you intend—show that autistic kids can very well have common ground with their non-autistic counterparts, that’s for sure. It’s a delight to see him concentrating on homework and smiling 🙂

    Blogging is tough, and weirdly I don’t talk about my kids as much on my blog, even though it’s a parenting one! I try to focus more on me and my learning experiences than on their particular traits, both good and bad. It’s the privacy thing; I don’t want to feel like I’m writing a memoir that eventually my kids will read, and it’s all about them lol.

    So I hide a lot of information or focus on me. Because yeah, I totally get your conundrum about wanting to share and help while respecting your kids’ privacy. It’s a tough balance for sure!October 25, 2014 – 11:45 pmReplyCancel

    • Kristi Campbell - Thanks for getting that, Nina. I really appreciate it although I still struggle with it a little bit. I know what you mean about not wanting to feel like we’re just writing a memoir (which is how this blog started actually – yikes). Thanks so much for your insightful comment. I guess I need to keep thinking about it…October 26, 2014 – 11:03 pmReplyCancel

Your email is never published or shared. Required fields are marked *

*

*

CommentLuv badge

N e v e r   m i s s   a   n e w   p o s t !