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

My Listen to Your Mother Video: Being a Special Needs Mom

I read at Listen to Your Mother and it felt AWESOMEListen to Your Mother Show videos are out!

I just got back from Tucker’s BigHuge Turning FIVE Birthday Extravaganza and Celebration, and discovered that special needs parenting is way better than sea monkeys.

The Listen to Your Mother Videos are all over Facebook and Twitter, and I’m swept up in the fun of reliving one of the best experiences in my life.

You can see them all at this link (and seriously, they are awesome), see the DC show from start to finish here, or just see me talking about what it feels like to be a special needs mom below.

I’m so honored to have been in this incredible show with such talented women. It was one of the very best days.

Here are the words, originally posted here, slightly modified for this show (originally written when Tucker was still three years old or so):

Having a child with special needs feels much the same as it does not to, and yet, well…different.  Having a child with special needs feels like you won the lottery times infinity times a gajillion because, as every mom knows, having a baby introduces a level of love that we’d never have imagined.

Having a child with special needs also feels jealous, sad, and a little bit cheated.

It means that you have a baby – just like everybody else – and your moods and your boobs are elated and deflated.  You’re overwhelmed and in awe.  Just like every new mother.  It also means that at some point, you realize that your child is different.

What being a special needs mom feels likeAnd because of that, you are, too.

Having a child with special needs means that you’ll spend days, months, and (sometimes) years pretending.  Pretending that everything’s fine.  That he’s “normal.”  You’ll talk about delays, and pretend to feel relieved when family and friends tell you not to worry about them.  You’ll want so badly to believe that every baby develops at his own rate that you’ll try.  You’ll try to believe.  You may run with that for longer than makes sense because you don’t know how to make sense of the fact that you know.  You know something’s wrong.

You’ll have friends with children who are mere weeks apart from yours when it comes to biological age.  When they’re tiny, you won’t see a lot of differences.  You’ll try to not focus on the small things and on the milestones.  Your friends’ kids will get older, as will yours.  And, all of a sudden, you’ll see more and more.  You’ll notice differences.  You’ll see your friends pretending not to see.  Reassuring you, that your son “will catch up,” meaning well and trying to say the right thing.  Again, you’ll pretend to believe them. 

You may waver between devouring every developmental milestone checklist that you’re able to find and pounding the delete key on your laptop when one of the new baby emails enters your inbox with the subject line of “He’s 18 months and is saying these words now!” 

At some point, the lack of language brings you to professional evaluations.  You’ll receive devastating news from a doctor, from Early Intervention, from a therapist, from a school.  They’ll confirm that you were right.  That your child is not typical.  

And you will only refrain from falling to your knees because your son is watching you. 

You’ll realize that not only have you been reading the wrong parenting books, but that you’re in the wrong library. 

You’ll mourn.

You’ll mourn for the baby you thought you’d have.  You’ll cry for the injustice of being dealt an unfair hand.

You’ll have faith.

You have faith that he will catch up.  Or at least be okay.  You have to have faith because the alternative isn’t an alternative.

Finally, maybe, you’ll understand that your baby is delayed.  Is not “typical.”  And you’ll do what you have to do.  You’ll seek therapy.  All of it.  You’ll pay much too much for a few hours of social interaction therapy in a single week, knowing that it makes a difference.

You’ll have met and fallen in love with your friends’ children. Your nieces and nephews. You’ll have spent years marveling at the precociousness and hilarity of young children and their incessant chatter. 

You’ll think about the child you might have had. You’ll grieve for him, and feel awful for it. 

At some point, you may shed bitter-hot tears over the fact that you miss this little person who was almost-fully formed, if only in your dreams. 

One day, you’ll realize that you’re rarely grieving for that might-have-been son any longer. You’ll forgive yourself and know that it’s okay to grieve the child that you’d imagined raising. That little boy that you can almost-maybe-see, sometimes.

You’ll reach a point where you want to come out to friends and family because you’re lonely.  And so you do.  They say they’re okay with it, but they don’t really get it.  A part of you doesn’t want them to get it because you don’t want their pity.  More than anything else, you don’t want pity.  But you also understand that it’s hard for them not to offer a bit of pity when it’s a situation that actually warrants some.

In searching for answers, you look at your cards and realize that others are dealt a much more difficult hand.  That some hands involve birthing babies fighting for their lives, who die, who were “incompatible with life,” and you feel blessed.  

Because you are.

You are blessed.  Every mother is.  Every parent is.

On the flip side, one day, you’ll get on Facebook and see somebody complain that her two-year-old called her fat.  You’ll feel jealous as hell that her two-year old knows what fat is, because your four year old thinks you’re perfect.  Fat and all.

And then, you’ll realize that maybe you’re the lucky one.  That having a two-year old call you fat makes for some funny blog material, but that having a four-year-old who still thinks you’re the best person in the history of time is pretty perfect.

You’ll see that although his language sucks compared to his peers, when you say “You’re my favorite person in the whole wide world!” and he pushes your face away with a silly grin, that in his heart, he’s saying, “I know, Mommy.  And you are mine.”

You’ll see love that’s bigger than you are. 

Life will be different than you imagined.

But ya know what?  It’s going to be just fine. 

  • Mike - I just lost an entire VERY long comment due to me hitting SOME incorrect key (of which I have no idea) and was literally screaming at myself. Please know you are always a beautiful, right and perfect woman, Kristi. Multiply that times infinity the mother that I see you are to Tucker. This last weekend I was inspired to share a dark life secret of mine. What blogger folks have come to know me as on the Internet is this nice, kind person with a cute, very funny and caring Golden Retriever. That is all very true. What many learned, including yourself, was that there always has been and is a much deeper meaning to that relationship. I had a bio mother (whom I do miss terribly) tell me and her university classes that I was the ugliest baby she had ever seen. The next “mother” that entered the life picture did a lifetime a damage that wasn’t until 11 years ago, began to be repaired. That is Phoenix. So, how this relates to YOU….is NOW you understand and know how deeply beyond what you can possibly fathom how much I love and admire the mother you are to Tucker. Why you always hear me comment how right and perfect Tucker is. Because is, always has been, and always will be. His continued success…love he feels, shows and evolves to understand…is a constant testament to YOU!! I could hug you both forever and each day you make our life better. We are so deeply proud of you and you knocked that presentation out of the world!! Thank you, with love, Mike and Phoenix 🙂July 10, 2014 – 4:06 amReplyCancel

    • Kristi Campbell - I hate when I lose comments like that, Mike! Often, I can do control Z (undo) and get it back but UGH. And thank you huge big huge gigantic for your amazing words. I know that there’s a much much deeper (and, sadly, darker and horrid) meaning behind how PDawg saved you and you him and how he’s given you light and hope again, which is really everything. I am in awe of you for sharing in the first place, and, as you know, hope you will write the Our Land, when you’re ready… because fuck. Hard shit, there, dude.
      Thank you for knowing it’s not always easy, and thank you for seeing all of the hugest potentials in Tucker. He’s an AMAZING kid, but he does have his (big huge) issues. Yesterday, his sitter was really bummed because she took him to a bounce house place and he punched (OMG how does he even know this) another kid who shoved him (first so better but STILL).
      You and Phoenix make us better. Your dedication to showing him new things and life and helping him kick cancer’s ugly ass, well. We adore you.July 10, 2014 – 9:10 pmReplyCancel

  • Robin - I haven’t seen the video yet but will. But your words are so beautiful. I think about this a lot–wondering if my worries about my son’s quirky development, and his success in the future are comparable to what a “typical” child’s mothers worries are. There are always some mom’s who look like they have it easy, and some who look, like you said, to have been dealt with more challenges. But looks, especially on social media, can be deceiving–all kids and relationships within families are complicated. Love your ending, about your sweet son, and how much he loves you for who you are, that’s pretty darn perfect in my book!July 10, 2014 – 6:48 amReplyCancel

    • Kristi Campbell - Thank you huge, Robin. I think about it a lot, too. I wonder about the different worries but the bottom line is that we all worry huge, and maybe, sometimes, it’s just about different things. I have to hang onto the hope that we’re so much more alike than different – us mamas.
      I try to not dislike the moms who look like everything is so easy but gah. Social media is SO fake!!! I mean, I don’t post pics of me where I look more than usually-ugly, ya know?
      And aww! I think it’s pretty darn perfect, too, that he just loves me. Here’s to that for all of us and for everybody.July 10, 2014 – 9:14 pmReplyCancel

  • Michele @ A Storybook Life - OK, “didn’t fart loudly enough for anyone to hear it” got me from the start! Your piece was beautiful and reflective and I am so glad to have shared the stage with you, and to have learned so much from you already.July 10, 2014 – 8:35 amReplyCancel

    • Kristi Campbell - Aw, Michele, I’m so so happy to have shared the stage with YOU, my sweet, lovely new friend. You were amazing, and brilliant and so so brave. And I’m so big huge happy for you and can’t wait to give your new baby belly a rub if you’ll let me. And thank you.July 10, 2014 – 11:23 pmReplyCancel

  • Tamara - So you did fart, right? Just not loudly enough? haha!
    I watched this this morning, actually. Yours drew tears from me. So did Kim Morand’s. Tears, I tell you!July 10, 2014 – 10:55 amReplyCancel

    • Kristi Campbell - Nah, I didn’t fart at all, but I might have, and nobody would have heard it because I was fartless, and poopless, and well, weird, right? And yeah, Kim’s was most excellent. Big huge excellent.July 10, 2014 – 11:24 pmReplyCancel

  • Lori Lavender Luz - Brava!

    I’m so proud to know you. And I think you’re as beautiful today as ever.July 10, 2014 – 11:22 amReplyCancel

  • Out One Ear - Linda Atwell - love, love, love this. You say the most perfect things to touch my heart. I wish I could say them as well as you. Thanks.July 10, 2014 – 1:53 pmReplyCancel

    • Kristi Campbell - Linda, you do say them. You say them all just perfectly perfect and thank you. I hope you’re having an amazing time in AK!!July 11, 2014 – 12:01 amReplyCancel

  • Elizabeth - Thanks, Beautiful. I am sitting in a public library trying, failing, to not cry. This is really amazing, so perfectly saying what I have felt, the whole continuum of fear, sadness, joy, gratitude. I have gone from sadly watching other kids at his school and *seeing* what is missing in him, to seeing what he has that none of those other children will ever have. What a roller coaster!
    Your post is beautiful tribute to the hands-in-the-air ride!July 10, 2014 – 2:21 pmReplyCancel

    • Kristi Campbell - Elizabeth, I know I know – and I know that you know. The fear, sadness, joy and overwhelming gratitude are overwhelming at their best and crippling at times, too. I know you get about seeing what’s missing, and yeah, a roller coaster for sure. Here’s to riding thislife with our arms mostly in the air – I love that. Thank you.July 11, 2014 – 12:21 amReplyCancel

  • Emily - Just watched…you were AWESOME as was that post. I have always had a big fear of public speaking and even though I sort of overcame it when I was in the workforce and had to give presentations, I still avoid it as much as possible. I’ve never read anything of mine out loud to an audience, other than one time when I took a writing pitch conference, where we had to read our pitches to the class. I really admire you doing this and one day maybe I’ll be courageous enough to give it a try.:)July 10, 2014 – 4:08 pmReplyCancel

    • Kristi Campbell - Emily,
      You would not believe how badly my hands were shaking – not only then, but in the readthrough, the audition, all of it. It was a little horrifying actually but I’m so glad I did it. I kept thinking that by the show, I’d lose weight, do something about wrinkles, etc, but when it came time to do it, it was just amazing. I would never think I’d have done it, but am so so glad I did. Please think about it for next year. you will be amazing. you ARE amazing. And, thank you, huge, for the support and sweet comment. xoJuly 11, 2014 – 12:24 amReplyCancel

  • Angela McKeown Momopolize - I’m so happy the videos are available not since I couldn’t make it to the show! You did such a wonderful job!!!!July 10, 2014 – 6:18 pmReplyCancel

    • Kristi Campbell - Thanks big huge, Angela. It was hard and also so awesome. I hope you can do it next year – your stories are so amazing.July 11, 2014 – 12:25 amReplyCancel

  • Lisa @ Golden Spoons - You were awesome and that piece was amazing! Brought tears and smiles!July 10, 2014 – 9:44 pmReplyCancel

    • Kristi Campbell - XO Lisa. And thank you huge. I hope next year that your schedule is better when it’s time b/c you are sure to be better than amazing.July 11, 2014 – 12:30 amReplyCancel

  • marcia @ Menopausal Mother - Oh Kristi, you did it to me again–made me all mushy and teary-eyed! This is painfully beautiful. And you totally rocked it at LTYM–you have great stage presence! XOJuly 11, 2014 – 1:15 pmReplyCancel

  • Lisa @ The Meaning of Me - You are awesome. That’s all. 🙂July 11, 2014 – 3:41 pmReplyCancel

  • Linda Roy - Just beautiful Kristi. So well done and so well read. I remember when you read it to us during the video chat then night before your audition. Even more wonderful watching you read it.July 11, 2014 – 9:08 pmReplyCancel

    • Kristi Campbell - Thank you so much, Linda. I love this comment, and it feels so so long ago when I practiced for you guys. Thanks for listening and encouraging me to do it. I really wanted to chicken out, except I didn’t want to chicken out and really really appreciated your support (and can I say “really” any more times in a comment reply?).July 13, 2014 – 11:34 pmReplyCancel

  • thedoseofreality - So beautiful and amazing Kristi. Your honesty and your words left me in tears. I am so proud that you shared this incredible message with the world. All who read or heard it are better for it. :)-AshleyJuly 12, 2014 – 10:30 amReplyCancel

  • zoe - wow, kristi! EVEN better than the practice on vid chat and I got all teary on that one!!!!! Lovely, simply lovely, zoeJuly 12, 2014 – 3:12 pmReplyCancel

    • Kristi Campbell - YAY for tears because that means I’m less of a freak for having them every time I even think about doing this OUT LOUD, on purpose. and yeah. thank you. big. xoxoxJuly 13, 2014 – 11:35 pmReplyCancel

  • Laurie Hollman, Parental Intelligence - It’s so great for all the viewers that you were on that show. Your words are so important for other parents to hear. How your emotions grew and grew and how in love you are with being your child’s mother, the mother you have become.July 13, 2014 – 3:30 pmReplyCancel

    • Kristi Campbell - Thanks so much, Laurie. I will always be in love with being my kid’s mom, but it’s true that before I had him, I was not sure about being able to love him. If even one person sees that and knows that it’s still fun and amazing? Then the time spent on SM is worth it. Thanks so much.July 13, 2014 – 11:49 pmReplyCancel

  • My Inner Chick - **You’ll refrain from falling to your knees because your son is watching you.***

    This line truly got to me.

    Fabulous, powerful video.

    Thank you for sharing your heart w/ honesty, love, humor, rawness, and insight.July 13, 2014 – 5:15 pmReplyCancel

    • Kristi Campbell - I love that you loved that line and that it got to you. I so clearly remember being at the doctor’s office (and at early intervention AND when the teachers came to our home) and almost almost almost falling, but looking over at my boy, and knowing he was looking at me, and saying “Ok. What should we do?” instead. It was a big moment, and continues to be one… so I thank you huge for commenting on it and recognizing its import.July 13, 2014 – 11:51 pmReplyCancel

  • Nathaniel Kidd - Your words are so profound and powerful. I enjoyed the video. You have a way of connecting with your audience. Your message is powerful and empowering. Thanks for sharing.July 14, 2014 – 2:45 amReplyCancel

    • Kristi Campbell - Thank you very much, Nathaniel! I appreciate the kind words and the visit.July 14, 2014 – 6:16 pmReplyCancel

  • Jhanis - Just saw the video today Kristi and oh my heart, I’m trying not to cry. Just beautiful! And the fact that you are such an inspiration to many makes you more special! Hugs to Tucker!July 15, 2014 – 3:41 amReplyCancel

  • Echo - I totally would have farted or croaked while trying to talk. I know it. You are so amazing, Kristi! Just awesome.July 16, 2014 – 12:23 amReplyCancel

    • Kristi Campbell - Echo, I’ll bet you’d rock LTYM. Is there one in your area? You should totally try out. You’d be fabulously awesome.July 18, 2014 – 5:08 pmReplyCancel

  • Norine of Science of Parenthood - What a beautiful post.July 16, 2014 – 9:59 amReplyCancel

  • Yvonne - I just got a chance to see this today Kristi and wow, you did so well! Your words at powerful and you spoke so well too. Like most other people have written, I almost cried. (And it was great to see you and hear you talk.)July 16, 2014 – 12:50 pmReplyCancel

    • Kristi Campbell - Aw, thanks big huge, Yvonne. It was such a powerful thing to get on stage and read something I’d written. xoJuly 18, 2014 – 5:15 pmReplyCancel

  • Misty - omg, your post should come with a tear-jerker warning! was there a dry eye in the house? the lady after you, oh my, i couldn’t make it all the way through her speech! you ladies are the bravest of the brave.

    i’m so happy you wrote and shared this with the world. it was like you had peaked inside my to the deepest, darkest, most hidden places of my soul.

    thankyou!!!!July 22, 2014 – 8:50 amReplyCancel

    • Kristi Campbell - well, my eyes weren’t dry… for sure there. Oh and the one you’re talking about after me is my sweet friend Michele Vaughn and she’s awesome. You should listen to her video – after all of that, she’s now pregnant, with a baby girl, and feeling good. Plus, she’s awesome. And yeah, here’s to our dark insides friend xo.July 22, 2014 – 10:29 pmReplyCancel

  • Steph - You made me cry. That was beautiful.July 22, 2014 – 11:14 amReplyCancel

  • Sylvia - So sweet and so true! I remember how frustrating it was for me that no one would agree with me that something might be wrong. It was so obvious, yet everyone thought that by denying it they were making me feel better! I needed support and answers not denial! Your public speaking is awesome! You’re so brave! Great job Kristi!July 22, 2014 – 12:17 pmReplyCancel

    • Kristi Campbell - Oh Sylvia, I remember those frustrating times when we KNOW we KNOW and people want to be encouraging, and well, they are and they’re not. Because we know… Thank you so much for your amazing lovely comment.July 22, 2014 – 10:32 pmReplyCancel

  • Foxy Wine Pocket - Wow, Kristi, just wow. Your words are so beautiful and powerful. And hearing you speak them was absolutely amazing. xoxoJuly 23, 2014 – 1:12 pmReplyCancel

  • Misty - Thank you for that!!!! It brought tears to my eyes. I just got back from a family vacation that had me feeling exposed. We drove 11 hours for my son to be so sensory overloaded that he could hardly function at times. The feeling of people staring at your child in disapproval when you know your child is struggling more then these people (strangers and family) could ever imagine is heartbreaking. Trying so desperately to find the magical solution to help their little bodies feel okay in environments that most don’t think twice about. When you find the magical combination and your child begins to smile, you know that smile that instantly melts your heart! That smile helps the stares and mumbling disappear and all to feel right in that moment. The pride that you have for your child whom has just overcome more than they should ever have to, is radiating. I may not always like it, but I love being a special needs mom!July 23, 2014 – 2:04 pmReplyCancel

    • Kristi Campbell - Aw, Misty, So sorry about the family vacation and feeling exposed. 🙁 That’s so so hard. I hate the feeling of disapproval and yeah, feeling the magical solution is so hard but SO rewarding to get that amazingly awesome smile.
      I love how you said that you may not always like it but love being a special needs mom. YES. <3July 26, 2014 – 2:17 pmReplyCancel

  • Meredith - Kristi this is so beautiful, like I told you before. I can tell you’re exactly the kind of mom your child needs, and that is an amazing, miraculous thing!!September 10, 2014 – 3:32 pmReplyCancel

    • Meredith - And, I hate that I can’t correct my misspelling of you’re. UGH! 🙂September 10, 2014 – 3:33 pmReplyCancel

  • Kathleen O'Donnell - Another beautiful post. It’s difficult to articulate how we feel as mother’s even when our kids are not autistic or don’t have special needs. You do such a beautiful job of finding the beauty in a difficult situation and telling us about it. Bravo.September 11, 2014 – 2:54 pmReplyCancel

  • Kristina Grum - This was beautiful. Simply beautiful.September 11, 2014 – 8:26 pmReplyCancel

  • Sharon - Hi Kristi I just watched the video of you and it brought tears to my eyes. Finally a mum who gets what it is like to have an autistic child. My son Caleb is 5 years old and he was diagnosed when he was 3. Every thing you said was exactly how I felt, and that family/friends will never quite understand what it is really like. It is a tough road ahead for us mums but it is also filled with lots of wonderful moments too. We are so lucky that our son goes to a main stream school (Catholic). The school has been so amazing in assisting our son and the children and their parents are also amazing. They have welcomed, accepted and loved my son and we feel blessed by this. I look forward to reading all your wonderful stories.
    Kind regards
    SharonSeptember 24, 2014 – 7:07 amReplyCancel

    • Kristi Campbell - Hi Sharon, I’m so sorry that I’m just now seeing this (UGH) really sorry. I love reading that your awesome son Caleb is getting mainstreamed and doing so well. I feel very lucky that Tucker is also mainstreamed right now although I also feel sad about it is that means he’s not getting some of the therapy he might benefit from (that made him talk)… Thank you SO MUCH for coming and commenting. It means the world to me.October 19, 2014 – 11:03 pmReplyCancel

  • Danielle Barker - Kristi — I just saw this on Although you may know it’s powerful, I wanted to let you know it touches on so many feelings and thoughts and things that most don’t understand even when you say it outloud. I’ve listened to this 4 times in the last 24 hours because I keep letting it sink in. Of course, I had to share it too because there are so many that suffer silently.

    Thank you.March 23, 2016 – 12:37 pmReplyCancel

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