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

10 Things Special Needs Moms Wish You Knew

10 Things Special Needs Moms Wish You Knew - Finding Ninee

The word autism entered my heart as a whisper. It later entered my brain as a possibility. Later still, it entered my life.

I worried, bought a book on autism, devoured it, and then felt like that must not be what my son has. He was nothing like the boy in the book.  “Maybe,” I thought, “he just has a language delay.”

I waited for him to start speaking more. For him to start playing in the way that he was supposed to play. He did play though, unlike the boy in the book, so certainly, his issues were different.

Never mind that he had an egg-sized bruise on his forehead for six weeks at 18 months from banging his head on the floor. As quickly as that behavior started, it went away. I stopped worrying about it. Sure, he ran laps around the house. But only when he was tired. Don’t all kids do that? Don’t they all twirl their hair, around and around and around, while drinking a bottle? 

I’ve mentioned before that parents and friends assured us that Tucker would catch up, and that his delays were likely due to me being at home with him as a baby.

They were wrong.

One day, I looked at my son and wondered whether he was deaf. He wasn’t responding to me that day. I gave him a little at-home test, and he responded. I let myself believe that everything was fine. What did I know? I had no other child in the house to compare him to. He loves to snuggle, and, from what I’d read, autistic children don’t. He looks at me in the eyes. I’d already learned from Dr. Google that children with autism don’t make eye contact…

Here. Four years later. Does Tucker look like anything other than a little boy having fun in the snow?

Does he look autsitic?

Autism doesn’t look like anything but the way it looks. It doesn’t look like Rain Man. It doesn’t always include hand-flapping, rocking, or issues with language. Sometimes, it does. But, sometimes, it doesn’t.

10 Things Special Needs Moms Wish You Knew

  1. People don’t need to feel awkward when they’re around my son. Yeah, they may need to treat him a little differently, but I wish they wouldn’t be weirded out.
  2. Not all autism is the same.
  3. People seem to think that because my son isn’t like the one single other person they know on the spectrum, that he must not be autistic.
  4. These kids love. They need love. They are wonderful and bring enormous joy and laughter to those who love them.
  5. Knowing one child with autism doesn’t mean anything really – they’re all so different. Please don’t tell me my son doesn’t have it because he looks so different from the other kid you know on the spectrum.
  6. Kids with special needs are smart. Talented. Creative, and thoughtful. It may not be obvious all the time – their minds work differently.
  7. If my daughter is making strange noises, feel free to look. She’s just excited. Please don’t stand there and gape at us with your mouth hanging open.
  8. If you see my son in a grocery store, he may be head nuzzling, chewing on the corner of his shirt, or spinning. He’s anxious. I will not scold him, so please do not look at me as if I should. He can’t help how his body receives stimuli. He is trying to cope with the way he’s affected by his surroundings.
  9. From onlookers who think I am not addressing my child’s odd behaviors: I ask for a little empathy. Don’t judge. Try to understand that his environment strongly affects him.
  10. Please accept our kids the way that you assume we will accept yours.

I think I’m speaking for all of us when I say that what we really want you to know is that we, as mothers, are both terrified and brave.

Just like you.

That while our children may act differently from what you’re familiar with, they are our normals. That they’re full of fierce love, tender hearts, and hope.


Our special needs kids are here, on purpose, and OutLoud.

Even when they’re silent.

special needs kids here on purpose2.jpg_edited-1

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

You may also like:
Will School Crush My Special Needs Son?
You’ll Love Your Retarded Baby (and we don’t say retarded anymore)

This has been a Finish the Sentence Friday post. Tonight’s sentence is “What I really want to scream out loud is… ” Next week, we’ve got “My favorite decade was…”  If you participate, feel free to join our Facebook group.

Your hosts:
Janine: Janine’s Confessions of a Mommyaholic
Kate: Can I get another bottle of whine?
Stephanie: Mommy, for Real
Me (Kristi): Finding Ninee
Tonight’s special host (the sentence thinker-upper) is Tarana Saddiqi, from Sand in My Toes. Please show her some love.

  • Emily - I think/hope (?) I helped a little with this when you asked me last night and I’m glad others were able to give you thoughtful answers too. I didn’t realize the post was for today! I love the list, love the writing, and of course can relate in every way.March 6, 2014 – 10:15 pmReplyCancel

    • Kristi Campbell - But of course you helped, Emily. You always do and you always have. I didn’t realize it’d be for today either so all’s well and good unless you want to add something, in which case I will so add it. I had a vision for this initially that just didn’t work, as the quotes with links well. But tell me if you want me to include something with a link ok?March 6, 2014 – 11:02 pmReplyCancel

  • Janine Huldie - Aww, Kristi, you said a mouthful here and truly just expressed all the things mothers of kids with autism wish we all knew. I cannot thank you enough for alway seeing so upfront about this and sharing over and over with us. I can’t say enough how much I adore you and your love for your little guy comes through loud and clear over and over. So, huge thank you for being just you and hugs, too!! 🙂March 6, 2014 – 10:17 pmReplyCancel

    • Kristi Campbell - Janine, thank you for you. I appreciate you saying that you appreciate me putting myself out there, because sometimes, it feels really hard to do so. Hugs right back to you, my friend.March 8, 2014 – 12:51 amReplyCancel

  • Deb @ Urban Moo Cow - I was really thinking the other day that I can’t wait to meet him when I come down for BlogU. And you, of course. But I really, really want to meet this extraordinary little boy.March 6, 2014 – 10:18 pmReplyCancel

    • Kristi Campbell - I think I’ll have Robert bring him up to BlogU on Sunday when we’re all getting ready to leave because I so want him to meet you – and you him – too. He really is amazing. I mean, well, they all are. Henry is. Still, a chance for you to meet him? Fucking awesome.March 8, 2014 – 12:53 amReplyCancel

  • Kathy at kissing the frog - Oh, I love this, Kristi. I really do. Every child is different, and to lump them in one group just because they have a certain diagnosis is just foolish and harmful. Thank you for putting this out there for other people to consider and understand. xoMarch 6, 2014 – 10:34 pmReplyCancel

    • Kristi Campbell - So right Kathy that every child is different, and I still am hoping you’ll write for Our Land!!! Judging anybody on a diagnosis feels cruel and unfair. Thanks, you, for getting it.March 8, 2014 – 12:54 amReplyCancel

  • christine - I will admit that I used to be one of the gawkers. Not on purpose, but because I just didn’t know what to do. I didn’t want to do anything wrong.
    I have to say, one of the best things that has come from blogging is getting to read all of the blogs of moms with special needs kids. I no longer stand back and watch. I have finally realized I was an idiot. Special needs kids are kids. Plain and simple. I know kids. I know how to talk to and work with and play with kids. As with any other child, I just need to follow the kid’s lead and all will be fine. So I do.
    Thank you for writing. Thank you for educating us. You (and all the other special needs moms who write) are doing good, helpful things.March 6, 2014 – 11:01 pmReplyCancel

    • Kristi Campbell - DUDE, you so rock. Yes, kids are kids are kids. And you know what? It’s not that bad to gawk. It’s bad to gawk and not say anything. I mean, ask, you know? Yes, you do know because you ask and TALK. And thank you so huge much for getting it and for trying to understand and well, for being awesome you.March 8, 2014 – 12:56 amReplyCancel

  • Sarah - Yes, YES! The denial and the acceptance. And the lessons learned. Thank you for publishing this list.March 6, 2014 – 11:28 pmReplyCancel

  • Chris Carter - So beautifully said, Kristi. My heart aches and cries and then rises in a certain mom-pride for all mothers everywhere- and for every single child- every one of them. They all- ALL are on purpose.

    And they ALL are loved.March 6, 2014 – 11:39 pmReplyCancel

  • Echo - Kristi, you nailed it again!

    I wish that people knew and realized these things.
    I wish that they saw my boy for who he is and not what he was diagnosed with.
    I wish that everyone could read you post!March 7, 2014 – 1:09 amReplyCancel

    • Kristi Campbell - I so wish that everybody saw both of our boys – for our boys. They are NOT their diagnosis. Thanks so much. Although I’m sad that you get wishing people SEE your son, too. May we do what we do to make the world less blind, yeah?March 8, 2014 – 12:59 amReplyCancel

  • Mike - I can not remember who posted it last week but it was about offering a quote – you and Beth were on there, I do remember that. My quote was, “Get educated before passing judgement”…or something close there. My feelings on that quote encompass every spectrum across our lives. And it included my very special new close friend, YOU Kristi. And Tucker. I continue to gain the most incredible education about autism and I’m grateful every day for what I learn. You amaze me as a mother and I love you to pieces for who you are as a person, and for the mother you are to that perfect little boy. That’s how I see him. For real. Just let him know I’m still starving for our guy’s night out with homemade mac n’ cheese! XOXO’S to you both always 🙂March 7, 2014 – 3:26 amReplyCancel

    • Kristi Campbell - Oh Mike, I can’t tell you how much it means to me that you have embraced Tucker as your little buddy and also as a perfect little boy. He really is, in all of the big ways. Sure, he scores zeros on tests that “measure” his age but fuck those tests, right?
      I loved your quote last week, too, by the way. So much and very happy to have you as a friend as well.
      Thanks so so so much for wanting to learn more about autism because of Tucker. He’s not every kid with it, but he’s here, and important, and brave. Thanks huge for your support.March 8, 2014 – 1:03 amReplyCancel

  • Tarana - Thanks for the list, it really needs to be shared. It’s important to remember, before we stare at another mom, that no one knows her child the way she does.March 7, 2014 – 8:50 amReplyCancel

    • Kristi Campbell - Thanks for getting it, friend. And yeah, nobody likes her kid to be stared at, no matter why!March 8, 2014 – 1:12 amReplyCancel

  • Tamara - Within my hospital baby group, two kids were diagnosed early with autism and with both, the mothers did have sinking suspicions but the rest of us didn’t know. And my friend made a post like this on FB once about what she wanted us all to know. It was beautiful. One main thing she said was that just because her son is so high functioning and we all rave about him does NOT mean he doesn’t have autism and that her time at home with him can be heartbreaking and frustrating. So basically she said that us telling her how wonderful he was didn’t help her. At all. I had no idea!
    That totally changed how I spoke to her. Her son is wonderful and beautiful and Scarlet loves to play with him. However, that doesn’t mean he doesn’t have autism.March 7, 2014 – 8:56 amReplyCancel

    • Kristi Campbell - Wow, Tamara that’s so true, I mean people tell me all the time how amazingly beautiful Tucker is – and they are right – this kid’s eyes will kill anybody with their depth and beauty, but also, sure, that doesn’t take into account that he has to Do the Things He Does, either. Thanks for getting it, sistahwife.March 8, 2014 – 1:14 amReplyCancel

  • Dana - My kids think the term “autism spectrum” is kind of strange, but this post proves why it exists. Autism isn’t just one thing, with one definition. To assume a child is a certain way because they have autism or any special need is to define him by a diagnosis. When you reach out to readers, you are debunking those assumptions and creating more empathy and understanding. Thank you for that Kristi, and thank you for sharing the thoughts of your PAC tribe.March 7, 2014 – 9:43 amReplyCancel

    • Kristi Campbell - I think the term “autism spectrum” is strange too, but I’m so much more comfortable with it than just saying “autism” for whatever reason (I’m sure that’s about me, and not about Tucker). But maybe, you just nailed why – to assume anything about a kid because you know another kid? Well. Yeah.March 8, 2014 – 1:17 amReplyCancel

  • Sandy Ramsey - I learn so much when I read your posts. I admit sometimes when I see a child in public and it looks like they are pitching a fit and the mom does nothing, I shake my head a little and judge. I won’t do that anymore. Sure, maybe some of them are outright tantrums but I will no longer just assume that. Because of you and the voice that you have for all of these brave moms and their incredible children.
    Every single point on that list needs to be heard. I think the one that struck me the most is that all kids bring uniqueness. ALL of them!March 7, 2014 – 10:01 amReplyCancel

    • Kristi Campbell - All kids DO bring uniqueness, Sandy, and I’m so with you on judging other people’s kids, and other people’s parenting methods. The thing is, though, we don’t know. We don’t know what else is going on – sometimes, maybe you SHOULD shake your head a little bit. God knows I do. But sometimes, like when Tucker refuses to wear a jacket, it’s not bad parenting. It’s respecting our kids. Thanks much for this.March 8, 2014 – 1:25 amReplyCancel

  • Sarah (est. 1975) - My 6yo son, who is not on the spectrum, is nonetheless a MASSIVE hand-flapper (like, MASSIVE) and has been ever since he was 3 months old. He sometimes gets weird looks and behind-the-hand comments when we are out and about. I just want to say to people: if you have questions (“Why is he doing that?”) just ask. It’s okay.

    I wonder if you feel the same?

    As an epileptic myself, I came to the conclusion long ago that I felt better when people with questions (or who were tempted to pass judgment based on very little information) just asked me, so that they could get edja-ma-cated and more informed. Sadly, people often don’t choose that route. What are your feelings about it?March 7, 2014 – 10:22 amReplyCancel

    • Kristi Campbell - I so completely feel the same, Sarah. I am more than happy to answer any questions about Tucker, his delays, autism, and also more than happy to say “I don’t know” but to start a dialogue about it. Kids are kids, and I just want people with typical ones to accept my son the way that they assume I’ll accept theirs.
      I’d definitely welcome a dialogue. And I thank you for asking, because that says a lot.March 8, 2014 – 1:30 amReplyCancel

  • Katia - Oh wow. What an incredibly important empathy checklist. Number 8-10 broke my heart a little bit. I don’t know why any parent wouldn’t extrapolate their own sense of love and acceptance of their child onto other kids. It breaks my heart that special needs moms would have to ASK for that acceptance. Not fair. Thank you for this list which really brings things home for me. Such an important observation on not assuming that all spectrum kids should be similar in a way. Why should they when non-spectrum kids aren’t. I loved #6 as well. We cannot dismiss their creativity just because it may manifest itself in a different way.March 7, 2014 – 10:34 amReplyCancel

    • Kristi Campbell - Katia, it breaks my heart that we have to ask for that acceptance, too, but it’s a reality. It’s like, parents bond with parents of non-special-needs kids, because they feel like “OH isn’t this cute?” And it IS cute. But what our kids are doing, much behind schedule maybe, is also adorable and worthy of embrace. Thanks so much for getting that part. It means so much to me that you do.March 8, 2014 – 1:33 amReplyCancel

  • karen - great post once again and so true. I think there needs to be a lot less judging from people, every child and family is different. if we all accepted and understood that life would be awesome.March 7, 2014 – 10:39 amReplyCancel

    • Kristi Campbell - YES!!! Every child IS awesome and it’s the grown-ups who just need to realize it. Thanks, Karen.March 8, 2014 – 1:34 amReplyCancel

  • Kerri - Oh I love this…they live OUT LOUD. Perfect, my friend, simply perfect. I think #10 is my favorite. We have to accept that their kids are perfect, right?March 7, 2014 – 11:14 amReplyCancel

    • Kristi Campbell - No doubt!! We are so expected to accept our friends’ kids!!! Why should we have to HOPE that they accept ours???March 8, 2014 – 1:35 amReplyCancel

  • Kelly L McKenzie - “Please accept our kids the way that you assume we will accept yours.” That’s it right there.
    Thank you. I shall.March 7, 2014 – 11:24 amReplyCancel

  • nothingbythebook - Love. Simply love.March 7, 2014 – 11:26 amReplyCancel

  • Michele - Kristi – this list makes so much sense, and has given me a lot to think about. Thank you for posting.March 7, 2014 – 11:31 amReplyCancel

    • Kristi Campbell - Thanks for reading and commenting, Michele. I think it’s important for people to know that it’s okay to ask questions, and feel awkward, but that our kids are just kids.March 8, 2014 – 12:04 pmReplyCancel

  • Jean - Thank you for putting this out there. For my part, someone who tries so hard to respond in a positive way- when I hear someone talking about a child who didn’t seem to be behaving properly or wearing at hat when it was below freezing and what are his parents thinking? I’ll speak up.March 7, 2014 – 12:30 pmReplyCancel

    • Kristi Campbell - You rock, Jean. It’s such a small thing to remind people that not all kids will wear hats and it makes such a big difference to further understanding and to stop assumptions that bad parenting is involved. Thanks so much.March 8, 2014 – 12:05 pmReplyCancel

  • Kenya G. Johnson - Great list Kristi, I continue to learn here as a bystander. I don’t gawk but I’m also probably very obvious in pretending not to see or hear.March 7, 2014 – 12:48 pmReplyCancel

    • Kristi Campbell - Yeah, I hear you on being obvious in pretending to not see or hear, as I think I’m obvious about it too. I usually just try to make sure to give the mom a smile if she seems stressed out – just so she knows I’m not annoyed, if that makes sense. It’s hard to know what to do sometimes though – like when a child is obviously physically deformed or something, I always feel like “does the mom want to chat? does she want me to be busy and not notice?” I don’t know. I guess we’ll all figure out what to do together.March 8, 2014 – 12:07 pmReplyCancel

  • [email protected] - I hope some day at a blogging conference or something you meet @LeisaHammett. Her daughter Grace is a phenomenal artist and Leisa is a huge autism and art advocate. Love her. 7, 2014 – 1:11 pmReplyCancel

    • Kristi Campbell - Thanks, Jamie. I haven’t heard of Leisa before – I’ll have to check her out. I appreciate you letting me know about her!March 8, 2014 – 12:10 pmReplyCancel

  • Chris at Hye Thyme Cafe - This seems like an odd thing to say, but it amazes me how often that people on the “lighter” side of whatever their issue may be have a tougher time of it in terms of services, etc. I grew up with someone developmentally disabled who isn’t “bad enough” to fit in with others similarly diagnosed, but not “good enough” to fit in with her “normal” peers. I know how alone and frustrated she feels trying to fit in and what a difficult time she has gone through trying to obtain services. Others with physical disabilities aren’t “bad enough” to participate in such and such, but still can’t play/join those without physical disabilities. They also seem to be judged more harshly because people don’t necessarily see what’s going on. I know someone else who is frequently assumed to be drunk. We joke about it, but I know how annoying it can be because she can’t do anything about it, and we don’t see her that way. It’s all very strange/frustrating. Wish there was a magic answer. 🙁March 7, 2014 – 1:15 pmReplyCancel

    • Kristi Campbell - Chris, what an insightful comment and wow to your friend who people assume is drunk. That must be rough. I know what you mean about people on the lighter side of an issue seeming to not fit in anywhere and I think it’s a problem in a lot of ways – school placement being top of mind. We have not yet had a chance to look at the kindergarten options for next year yet, nor met to discuss them, but I’m already nervous about it. While of course, I’d like Tucker to be around typical developing kids his age in a classroom, I also never want him to feel dumb, less than, or different in a bad way, either. Thanks so much for your insight.March 8, 2014 – 12:12 pmReplyCancel

  • Brianne - Hi Kristi – Your PAC mom friend Joanna sent out a link to your blog on the POAC-NoVA mailing list last week, and I’m so glad she did. I’m a PAC mom too and didn’t realize there was a blog out there that hits so close to home, in more ways than one. Just wanted to say hello and thanks for putting yourself out there.

    I would add to your list: Kids with autism and special needs smile and can be happy! My daughter can be very bubbly, which often confuses people if they find out she has ASD, as if the two can’t exist in one person. They also usually have yet to witness her not-so-bubbly side 🙂March 7, 2014 – 1:51 pmReplyCancel

    • Kristi Campbell - Brianne,
      Thanks so much for visiting and for the great addition to the list. You’re so right that they can be happy!! People have so many misconceptions. I’m still learning, too. When Tucker first started PAC, I was convinced he just had a language delay…sigh. I’m so glad that Joanna sent Finding Ninee out to the POAC list and that you found us here. Thanks again!!March 8, 2014 – 12:15 pmReplyCancel

  • Joanna - I love it! I read this post at least 10x. It’s awesome, powerful and true. Thanks for being there for so many people including me 🙂March 7, 2014 – 3:21 pmReplyCancel

  • Teresa Danner Kander - Beautiful reminders….thank you for sharing!March 7, 2014 – 3:46 pmReplyCancel

  • Jennifer Todd Atlas - I love you Kristi. You rock.March 7, 2014 – 5:05 pmReplyCancel

  • Lizzi Rogers - YES! Good.

    And I really like that you included viewpoints from others in your world, and gave them a voice here. That’s really special, Kristi. Good for you 🙂March 7, 2014 – 5:33 pmReplyCancel

  • Stephanie Smith Sprenger - This needs to go viral. You are amazing. What a fantastic post- I loved that you got input from other moms. xoMarch 7, 2014 – 9:19 pmReplyCancel

  • Beth Teliho - This was unbelievably touching. And just as much important. So so so good, Kristi. *HUGS*March 7, 2014 – 9:54 pmReplyCancel

  • [email protected] Menopausal Mother - #5 and #6– so perfect and powerful. Tucker is beautiful, Kristi.March 7, 2014 – 9:59 pmReplyCancel

    • Kristi Campbell - Thanks, Marcia! I agree that he’s beautiful 😉 and am sure I’m not biased at all!March 8, 2014 – 12:26 pmReplyCancel

  • Don - Our friends’ daughter never really “looked” autistic unless you really paid attention I think, so I was always on the defensive, probably even more than her parents, when we were in public and she started on one of her tangents or whatever. Special needs parents have to deal with the same things as parents of regular kids(is that the term to use, lol) plus the extra crap and sometimes, it’s not fair. These sorts of lists and posts about how you want others to treat your kids are important. A lot of people just don’t know, even though many of us want to know, if that makes sense. As always, Tucker is beautiful.March 7, 2014 – 10:22 pmReplyCancel

    • Kristi Campbell - You rock for looking out for her Don! That’s awesome as are you. And yeah, we have to deal with the same stuff as all parents and some other worries as well, obviously. I love that you want to know, too. And happy happy birthday, DOAT.March 8, 2014 – 1:31 pmReplyCancel

  • Real Life Parenting - Oh, Kristi. Every time I read your stuff I want to be a better person. I want to make a positive mark in the world. I want to do and be more.

    Another post I love. <3March 7, 2014 – 11:19 pmReplyCancel

    • Kristi Campbell - Aw, RLP, you make my heart all happy and fluttery and stuff. You already are a better person, making way big positive marks in the world. And way big is totally grammatically correct. xoMarch 8, 2014 – 1:32 pmReplyCancel

  • Sylvia Mumford-Phillips - When we were searching for answers about my now 23 yr old son with autism. I absolutely hated when people tried to tell me I was imagining things or over reacting! All I wanted was for someone to notice the obvious and tell me so!!! I also love how it’s always the mother’s fault. If you had been a working mom and put your son in day care, that would have been the reason!!March 8, 2014 – 12:35 amReplyCancel

  • Kat - I am very grateful every day that neither of my kids are special needs kids and have tremendous respect for parents who live with this. I can’t imagine what it is like to be in your shoes. I have learned over the years not to judge parents I see in public with children who are “acting out” because, if I don’t know them, then I can’t possibly know their situation. If I know that a child has autism, I always take my cues for interacting with them from their parents; after all, they know their child best.

    Thank you for posting this for those of us who are not in your shoes.March 8, 2014 – 9:42 amReplyCancel

    • Kristi Campbell - Kat, thanks so much for the great comment. I love that you don’t judge parents when you see that their kids are acting out in public – you’re so right that we don’t know the situation. The kid might have sensory processing issues, and what are the parents to do? Never go anywhere? That’s not very realistic. Thanks for getting it!March 8, 2014 – 1:35 pmReplyCancel

  • Jennifer Steck - Another beautiful post, Kristi. I’m so glad there’s more information out in the public eye than ever before. People are interested and learning, so all these tips make a difference. And…Tucker looks like he’s having a fabulous time in the snow. So, cute…March 8, 2014 – 10:50 amReplyCancel

    • Kristi Campbell - Thanks, Jennifer! Tucker does love playing in the snow – it’s awesome to watch. Of course, he likes throwing snow in my face, but seeing his smile is almost worth that. Thanks for reminding me that people ARE interested in learning. xoMarch 8, 2014 – 1:37 pmReplyCancel

  • Kate Hall - Before I became a parent I thought all autism looked like Rainman. It took having friends with children who have autism and reading blogs like yours to show me that autism looks different in every child. Have you thought of submitting this to BlogHer for syndication? It’s really good.March 8, 2014 – 12:23 pmReplyCancel

  • April - Your story reminded me of one when my friend thought her son had autism. I remember trying to reassure her that the time frames for child development were just guidelines. So I was right until I was wrong. I had to apologize for my ignorance to her. He is a blossoming little boy, who has autism. Thanks for sharing the story.March 8, 2014 – 7:38 pmReplyCancel

    • Kristi Campbell - April. WOW. Powerful. I was probably that mom. The thing is, we were all right, until we were wrong. Thank YOU.March 9, 2014 – 11:37 pmReplyCancel

  • Jean - what you said is right on target and perfect. It is nice to know you have a good handle on it and have accepted what it is OK to accept. When my kids were little NO ONE knew anything. One of my friends (you would search all over in all sorts of ways to find a parent with a child with autism) said…”It’s like we’re hacking through the jungle with no compass and just a machete”. I never forgot that. I never forgot any of the things we went through, individually and together. thanks, jeanMarch 8, 2014 – 8:46 pmReplyCancel

    • Kristi Campbell - Jean, thank you so much for sharing – while it is better and different now, we still had a lot of struggle in trying to figure out (deny?) that what this is is autism. I love the quote about the jungle and likely will remember that forever as well. Thanks so much for sharing it!March 9, 2014 – 11:40 pmReplyCancel

    • Jean Yates - Please do not misunderstand me. I would never ever tell you that what you have gone through and will go though is anything “less” that what we went though, just because we did it a generation ago.
      In fact, the way I see it, two machetes are better than one, and it is comforting to me to have met you.
      In fact, I have had your button on my sidebar for around a month because I like it so much! xox jeanMarch 10, 2014 – 6:49 amReplyCancel

      • Kristi Campbell - So sorry if I made it sound like we are going through “less.” That was not my intent at all, and if anything, I think it must have been MUCH harder before autism and special needs were a part of school’s awareness and curriculum. It’s still obviously a button for me but seriously, I feel so much for parents who dealt with issues like the one my son has before they were more understood.
        Love the Two machetes are better than one analogy and didn’t realize that you love somebody with a developmental delay as well, until you said so now. I’ve admired your beading skills and jewelry but really had no idea. I’d love to hear more, if you’d like to share. i also have an Our Land Series, if you want to check it out -I accept stories about personal struggles and finding empathy for them. Thank you so much for getting back to me.March 11, 2014 – 12:14 amReplyCancel

  • lizzy - muddle-headed mamma - What a brilliant list. It’s what I wished I’d read before I became a teacher. I have heard many conversations numbers 3 and 5. I think that’s an essential discussion to make everyone aware of – the spectrum is broad and individual children have individual needs.March 9, 2014 – 10:21 amReplyCancel

    • Kristi Campbell - I think it’s an important conversation to have as well and hate that this stuff is not more federally mandated. They’re saying 1/50 kids now. Even if they’re wrong, and it’s still 1/88, or 1/120, it’s too many to not have programs for!!!March 9, 2014 – 11:41 pmReplyCancel

  • Brittnei - Aw. Now I feel bad like I’m in denial about Tucker. I feel like I know him and that no, he doesn’t have autism. The doctors just don’t know what they’re talking about 🙂 I remember the post you shared about him going on a prom date sometime in the future and being “normal.” He is normal. 🙂 Is that bad that I look at him this way when I read your blog? I know autism doesn’t always look the same, but you and Tucker are like my next door neighbors that I visit regularly or something. Perhaps I look at him as normal because I never once did or thought any of these things about him that many people think when they see an autistic kid even after hearing so many stories about him. I know you experience things that moms with kids who aren’t autistic may not experience but so many things you share is the same as what I go through mostly in my life with my son and family. I still think Tucker will be fine 🙂 But I totally hear these moms. 🙂March 9, 2014 – 11:08 amReplyCancel

    • Kristi Campbell - Aw sweets don’t feel bad!!! I’m in denial about Tucker, too! 😀
      You do know him, and you don’t, too, because of course it’s much harder to write about the stuff that IS weird/quirky than the stuff that’s the same. I think that it’s important to write about the same though. Because, although he IS different (he really is), he’s also sooo much more the same than he’s different, ya know? Like he wants friends, loves his best buddy, wants to be tickled and cuddled, and tries to manipulate us. SO from your perspective, he is the same. I hope you will meet him one day (and that I can meet yours as well and can’t wait to see photos of the new baby – hurry up LOL.). DO NOT HURRY that was a joke. 😀
      I know so much of it’s the same. I get where you are. It’s also different, because Tucker is 4 1/2 and has a hard time with things that some 2 year olds don’t. His language comes hard to him. Too hard to be fair…but it’s coming, which is lucky, because some of his friends don’t really speak much at all. So we have that. And we’re blessed.March 9, 2014 – 11:46 pmReplyCancel

  • Ruchira - Just today I met a mom who volunteers her time at PACE. I got to know so much about this organization that it brought tears in my eyes and I am seriously thinking of giving my time to such an orgaization that is trying to bring so much to kids and their parents.

    Just reading your blog, makes me realize the pain Kristi. All I wanna do is hug you, my friend!

    hang in there, cause i definitely see light at the end of this tunnel.March 9, 2014 – 4:34 pmReplyCancel

    • Kristi Campbell - Wow, really, Ruchira? That’s so wonderful that your friend volunteers!!! I love that!!! And please also know that any pain that parents like me feel is more than worth it – we don’t see our kids as anything but our kids most of the time. Sure, we notice their differences, but to us, they don’t seem like they should affect people wanting to know who they are because they are AMAZING and awesome, and also? Thank you 😀
      I see light now too.March 9, 2014 – 11:49 pmReplyCancel

      • Kristi Campbell - Also, not sure what PACE is, but I was talking about PAC which is = to preschool autism class. So if PACE is something big, I apologize for not knowing about what that means. Yikes sorry about that assumption.March 9, 2014 – 11:51 pmReplyCancel

  • Lisa @ Golden Spoons - Love it! I felt some of these same thing when I taught special needs preschoolers. I had one in particular who had behavioral issues and the other teachers – educational “professionals” -would seem so annoyed when he had a meltdown in the middle of the hall or during an assembly. Their looks said volumes even though they said nothing.March 9, 2014 – 10:10 pmReplyCancel

    • Kristi Campbell - Oh Lisa. I hate that you know the look. Every kid deserves compassion and the fact that they were, instead, considered a pain in the butt? Well. Sad.March 9, 2014 – 11:52 pmReplyCancel

  • Sylvia - Thanks for sharing at FF! I hope you’ll come again!March 9, 2014 – 11:41 pmReplyCancel

  • Nina - Kristi… I love, love this. I love how you write, period. And thank you for sharing this. You invite us into your world with clarity and heart and I can’t help but admire you for being fair and patient with us parents who aren’t raising special needs kids.

    It’s so easy to assume or freak out or react, but in the end, all our kids are still kids. Kids who need us to be kind to them, not to give them awkward looks and stares.March 10, 2014 – 11:02 amReplyCancel

    • Kristi Campbell - Cheers to all kids just being kids! THAT, right there, is why I probably have this blog and I thank you for saying so and recognizing that. So much.March 10, 2014 – 11:37 pmReplyCancel

  • JenKehl - My Skewed View - This reminds me a lot of my Our Land.
    It’s all so true. Isaiah has bad days and great days. And few in between. And the truth is I never know what we’re going to get which leads to some nerve wracking days….
    This is a great post. I am sure it will help a lot of non-bloggers 😉 😉March 10, 2014 – 7:16 pmReplyCancel

    • Kristi Campbell - Thanks, TTTx10 Jen. I guess we never know, and honestly? I really do hope it helps although I also feel like we didn’t say that much new, but also know it’s new to some parents, hopefully. I mean I hope, anyway…I know you get it…and thank you.March 10, 2014 – 11:44 pmReplyCancel

  • Michelle - Every kid IS different…it’s crazy to lump everyone together. Thanks for sharing it…I’m going to pass it along too. I think it’s important for people to understand that autism is has a broad spectrum, and everyone has a different normal.March 10, 2014 – 10:39 pmReplyCancel

    • Kristi Campbell - Thanks, Michelle, you’re right that every kid is different, and I guess what I’m trying to say is that I hope everybody can learn to accept our atypical kids the way they just assume we’ll accept theirs. I think that’s the take-away….March 10, 2014 – 11:47 pmReplyCancel

  • Crystal - What a wonderful post, Kristi! I’m going to share this with some parents I know who are struggling with autism and pushing their kiddo awfully hard. Reading these words might make a difference. 🙂March 11, 2014 – 8:34 amReplyCancel

    • Kristi Campbell - Thanks so very much, Crystal! I know a family who is really struggling right now too and trying to push their son to do things that he’s really not ready for – it’s hard. Thanks again.March 28, 2014 – 9:59 amReplyCancel

  • Lady Lilith - Acceptance is the key. I work with special needs children and so many people feel sorry for them. I find if you accept any child or who they are, you can raise the bar and help them reach the next level.March 11, 2014 – 11:27 amReplyCancel

    • Kristi Campbell - Yes yes yes to please don’t feel sorry for special needs kids! Acceptance is everything.March 28, 2014 – 10:00 amReplyCancel

  • Andie - Thanks for sharing this awareness. Great insights on this post.March 12, 2014 – 6:11 amReplyCancel

  • linda Atwell - Out One Ear - Oh Kristi: Yes Tucker looks perfect. He looks exactly like Lindsey did at that age. I could see some differences, but not enough and besides, she looked so frickin’ normal (typical). Some people said I had nothing to worry about. Other’s said her traits weren’t typical. It was a confusing time–especially since she was my first too. Then we had Michael who whizzed past his sisters milestones and surpassed her quick, but still, we thought she would catch up. Every story is different. Lindsey didn’t catch up and the gap widened and the older she got, she often had a untypical look about her that I’d never noticed when she was small. I think the gap just finally widened enough between her peers and herself that—oh, I finally had to admit that she really was what the doctors said. But that is a different story.

    I love the list. I love the first line: The word autism entered my heart as a whisper. I love the preface. Thanks for another awesome post.March 12, 2014 – 12:46 pmReplyCancel

    • Kristi Campbell - Thanks so much Linda. It really is a confusing place especially when different people have differing opinions of Tucker and that he may “catch up” or whatever.March 28, 2014 – 10:05 amReplyCancel

  • A Morning Grouch - Love this post – so, so good. I teach my students who are learning about autism the old adage, “You’ve met one person with autism, you’ve met one person with autism”. Try to beat that in their brains – ALL of us are unique – individuals on the spectrum are no different.March 12, 2014 – 7:24 pmReplyCancel

  • Monika Sharma - Absolutely right, This post is really amazing & I appreciate such a wonderful & easily explanation. Which a mom must know ! Great Post.March 13, 2014 – 3:07 amReplyCancel

  • The Monko - What a great post. Many of the behaviours you listed when your son was young are things my son did too – including the head banging and running laps – so I get why you might be concerned and yet not convinced.
    I never know when a child is making funny noises or acting in a quirky way whether it is better to look or not look. Its really helpful to have some mum’s perspectives on what they’d like from me. I usually try a glance and a smile and hope that that conveys ” your child is sweet and while your child’s behaviour is interesting to me it is in no way bothering me so please don’t feel stressed by me”. Even if they don’t get that from it I hope the smile says “hey we are all parents together’.March 13, 2014 – 9:27 amReplyCancel

    • Kristi Campbell - I think a glance and a smile meant to convey that the mom shouldn’t be stressed by you is perfect and yes, we’re all parents together – above all differing abilities! Thanks much!March 28, 2014 – 10:25 amReplyCancel

  • Courtney Conover - Wow, Kristi. Just…wow. Numbers 7, 8, and 9 made the levies break. I’m all-out bawling over here. I don’t have an autistic child, so I’m not even going to begin to say I know what parents of autistic children go through day in and day out. However. I do know that judgment — regardless of the reason — hurts like a bitch. The way Scotty has been perceived based solely on his language delay has brought out a level of frustration in me that I didn’t know I was capable of feeling. People can be mean. Very mean. Even now, though he has made tremendous strides and we are not fighting the same fight, I am grateful for what his challenges have taught me — about him and other children.

    Beautiful post, Kristi. Thank You.March 13, 2014 – 11:21 amReplyCancel

    • Kristi Campbell - Sorry Courtney to have made you cry. I hate that you, too, know the judgement and that people have been mean. 🙁
      It’s sad how judgmental people can be without knowing what they’re talking about – I hope that we can all get closer to a place in which each of us is more accepted for who we are and not for what we may struggle with. xoMarch 28, 2014 – 10:36 amReplyCancel

  • Tracie - The thing that sticks out to me from this list is how often possibly well-meaning people who do not have medical degrees, try to argue or disagree with the diagnosis you have received from an actual doctor. That is very frustrating.March 13, 2014 – 6:56 pmReplyCancel

    • Kristi Campbell - I know what you mean, Tracie! People don’t know what to say or do. I honestly think that most people are well-meaning but at times can be hurtful and insensitive. Thanks so much for coming by!March 28, 2014 – 10:37 amReplyCancel

  • Julia Starr Arnold - I love, love, love this post. He is so lucky to have you. ~Julia/Frantic MamaMarch 14, 2014 – 12:40 amReplyCancel

  • Lisa @ The Meaning of Me - It’s been far too long since I’ve been over here, huh? Life’s been a bit nuts. How are you???
    I loved this…Our special needs kids are here, on purpose, and OutLoud. I’m always hesitant to jump in on a discussion like this because I fear someone will say I have no business, but I think special needs is as wide a swath as the autism spectrum – there are all different kinds. This line fits and I can’t tell you how great and how well timed this list and post are for me right now. As always, you have such wonderful insights here.
    I’ll be back for more – lots to catch up on!
    And Tucker, by the way, is gorgeous!March 22, 2014 – 10:55 pmReplyCancel

    • Kristi Campbell - Hi Lisa!
      I’m doing well thanks. And no worries – I know you’ve got lots going on these days. Me, too, being as I’m seeing this comment six days later! Yikes! Also? You have my expressed permission and even encouragement to jump in any time because everybody has business when it comes to accepting people for who they are. All the time.
      Hope you’re having a great week!March 28, 2014 – 10:39 amReplyCancel

  • Sam Gee - beautifully written, you’re pretty awesome.

    Such a familiar story, but you have a wonderful way of putting into words things that i have a hard time saying <3March 28, 2014 – 3:25 pmReplyCancel

  • Seana Turner - Wonderful, insightful and poignant post. I have someone in my life who has this, and to be honest, of all of the young adults/teens in my life, she is the happiest. Yes, there are unique struggles, but I’ve learned so much from her:) Sharing your perspective is the kind of thing that will ultimately make the greatest difference!March 29, 2014 – 1:48 pmReplyCancel

  • Lillian Connelly - You’re doing a good job on this whole mom thing. I think Tucker is lucky to have such a amazing advocate in his corner. I am sure you have inspired other mothers to speak out about this too.October 21, 2014 – 11:11 amReplyCancel

  • Roshni - This is so warm and wonderful to read this morning! I’m going to share it with someone who needs it right now! Thank you for bringing my attention to this link, Kristi!October 21, 2014 – 12:23 pmReplyCancel

  • Jana - I think, like most things, people fear the unknown. They feel awkward and uncomfortable because they don’t understand it — or are afraid of saying or doing the wrong thing. This post is great because it gives some valuable information — I learned a lot!October 21, 2014 – 11:42 pmReplyCancel

  • Christine Carter - Oh, how I love this post… this message. A MUST read by Kristi Rieger Campbell. <3November 20, 2014 – 4:32 pmReplyCancel

  • Christine Carter - Oh, how I love this post… this message. A MUST read by Kristi Rieger Campbell. <3November 20, 2014 – 4:33 pmReplyCancel

  • Sarah Honey - I love this! Everybody should read and take note!November 21, 2014 – 2:50 pmReplyCancel

  • Crystal - This was exactly . . . Right and good and so much of my own heart.January 28, 2015 – 9:04 amReplyCancel

  • Jennifer Peluso - This was like reading about my 3 year old son, Michael. Even the pictures are similar. I am so grateful there are moms like you out there to bring a face to our very unique little guys and gals!February 26, 2015 – 3:26 pmReplyCancel

  • Ellie - Well said! As a future educator, this post really helped put in perspective a parent’s feelings towards other’s views of their child. I thought that number 6 on your list was especially important to remember-all children are capable of learning, as long as we find the right way to do it!November 28, 2015 – 8:04 pmReplyCancel

  • Erin Fullerton - As an occupational therapy (OT) graduate student my knowledge of OT grows with each assignment. At the same time the depth of my connection with the core principles of our practice reinforces who I want to be as an OT practitioner. The OT Code of Ethics outlines the seven core values as, “altruism, equality, freedom, justice, dignity, truth and prudence”. The appeal for justice is a call for advocacy. I want to be an advocate for families of children with autism spectrum disorder (ASD). I have read studies about the link between PTSD and parents of children with ASD. The Disability Scoop notes that their “chronic stress [is] comparable to combat soldiers”. I believe the family-centered and community-based practice in OT can be a source of support for parents. OTs trained in these practices recognize the impact of ASD on the whole family dynamic and communities, whether a local association or an online community of a blog, can be created to be an outlet for expression and encouragement. No parent should feel they are alone. So I was thrilled to come across your blog and I believe it is a significant resource. Thank you for sharing your family’s story and teaching me about the realities of life with ASD. I pledge to continue to follow your blog, and similar family blogs, to better prepare as an OT practitioner.December 14, 2015 – 3:34 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 !